24 February 2012
15 Things You Should Never Say To An Autistic
Trigger warning: Quotes of things that shouldn't be said. They can be ableist and triggering.
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.
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 his or her 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. If an Autistic person was diagnosed by a qualified clinician familiar with autism, that person is Autistic, regardless of whether they look, speak, or act like another Autistic person.
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 him or her 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 a Black or African American if he or she likes watermelons or rap music because he or she is Black or African American.
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 he or she was on medication for anything, so you shouldn't ask an Autistic person whom you don't know very well if he or she takes 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 his or her 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 his or her 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 him or herself or stop moving in ways that come naturally and instinctively. This is like asking a Christian who likes to wear cross jewelry to please not wear a cross necklace in public, or asking a Latino or Hispanic from an hispanohablante country to please not speak Spanish while in public. 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 him or her 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 his or her preferences in referring to him or herself, 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.
99 comments:
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Awesome! Will tweet.
ReplyDelete
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Lorentz
Love it, thanks!
ReplyDeleteAmazing, it speaks for all of us!!
ReplyDeletePity there iznt a blig for us poor fuckers that have to live with autistic people.
DeleteAutism excuses bad behaviour.
What is wrong with living with a person with Autism? I do it everyday!! My oldest son is Autistic and I do not allow anyone to excuse his behavior because of his disability, not that there are many cases. My son is very well mannered, addresses people by their last names until he is told differently and everything is please and thank you! I have raised my son well and pretty much on my own since he was diagnosed 16 years ago. So for you to sit there on your high horse and bitch and complain about there not being any blogs for you to complain on leads me to believe that you are a person that cannot or will not tolerate someone with a disability such as this. As a paralegal in the Province of Ontario, I can tell you that this is discrimination of the highest level!
DeleteI am autistic as is my daughter and it is damn difficult living among you illogical 'normals' you know!
DeleteYou mean all the mommy blogs and message boards full of people who go on and on about how it's so awful that their children toe walk, flap, don't make eye contact, and use non-spoken forms of communication and don't make a single bit of effort to understand why their kid might be having a hard time in a world that overwhelms them and then hates them for being overwhelmed just suddenly disappeared? Wow, awesome, when did this happen?
Deletemy brother has autism, i know dang well that it isn't bad behavior
DeleteThank you for making us all look like thought policing twats
DeleteReally anynonamus (1) you are a bitch. It's not like people can help be unautistic
DeleteHi, i dont know if am right but is only one thing that bother me on this entire page, calling the autism a disability. I really dont careabout the first post guy/girl i think is brainless.Please check this link out http://articles.baltimoresun.com/2013-04-10/news/bs-ed-autism-20130410_1_autism-research-autism-diagnosis-national-autism-awareness-month
DeleteAt the anon saying stuff about how autism excuses bad behaviour. You are so wrong. Whenever I do something bad I hold my hands up and admit I am in the wrong. I have autism and I find your comment about people looking after autistic people being "poor fuckers" rude. People who have autism didnt ask to be born with it. I detest people like you, people who make the remarks, give funny looks and point. I hate people who accuse me of milking my disability or using it as a crutch. I hate people who discriminate us. I tell you what though thank god there are people like you because I'd rather be autistic than like you: rude, nasty and all the rest of it. I used to want to not be autistic because of how I was treated. I hope no one in your family has autism as then you have just bad mouthed them for being different too. From Leeann Turner
DeleteLydia,
ReplyDeleteI found this list very helpful - There could be a similar list..."15 Things you should never say to a parent of an autistic." There are some questions, similar to the ones above though addressing a parent, that trigger my rath.
I'm sure Erin will read this list.
Thank You.
I've seen at least two blog posts on that note -- things to never say to a parent of an Autistic child. I didn't see anything like this, so I decided to go ahead and put it out there hoping that people like you would find it useful.
DeleteBlessings and peace,
Lydia
And then there are the Things Never to say to an Autistic Parent of a Spectrum kid....which is a blog I need to write sometime when I actually get a handle on things around here....do need to correct the comment about not saying "what's it like to be..." regarding race, religion etc. I am Jewish. I moved to the midwest, where there are not a lot of us. I have indeed been asked by "nice Minnesotans," what it was like to be a Jew, and the most amazing question: "Do you wear your hair like that (my hair is very curly) to hide the horns? Martin Luther said Jews have horns."
DeleteYeah, Luther only started saying that crap about the Jews after he realized they didn't care about his Protestant Reformation.
DeleteI suppose people can be a lot more ignorant than I'll give them credit for being. I'm sorry that happened to you, Jane. I suppose the point still stands, though, that in most parts of America, asking someone "What's it like to be Jewish?" like that would be considered rude and offensive, whereas very few people consider asking, "What's it like to be Autistic?" rude or offensive.
DeleteYES... there should be a list of what NOT to say to a parent of a child with autism. At our IEP meeting we were told, and it was entered as 'data' on the IEP that the teacher did not see ANY his autistic behavior at school and that she had 2 more students in the class that are much more autistic, therefore he is normal. In the IEP the teacher kept bringing up examples that showed he was not autistic. It was a twilight zone meeting.
DeleteWe've also had people ask us questions in front of our child... as if he was not there, comment to others that 'there's the autistic boy', and things like that. Perhaps we start a Google Document or other shared portal and create this list?
There actually are at least two blog posts like that that I've read already. I don't have links offhand, but I know I've read one about things said in IEP meetings, and two said to parents of Autistic children.
Delete@Jane Strauss: Jews with horns: http://www.youtube.com/watch?v=DkY-TYTHRGU
Delete(...horns, and trumpets, and trombones, and tubas... and percussion and woodwinds and strings! :-))
As a parent of a 22 year old who was diagnosed with Aspergers a few years back, but who I constantly struggled to find a diagnosis for throughout most of her school years, I find it very hurtful and frustrating when people tell me she's just like most other girls her age. And they would know this how?
DeleteAfter explaing my sons diagnosis and the services he was receiveing in the home to another mother.. She turned to me and said "at least you don't have to hire a babysitter!". I nearly punched her!!
Deleteexcellent! i have already shared and will continue to do so. Thanks, Lydia!
ReplyDeleteWhile all of these are excellent, #15 is the most salient for me, one that those of us who are parents of autistics especially need to really and truly understand. Thank you, Lydia!
ReplyDeleteI actually do somewhat take issue with #13.... When i'm trying to get to know someone who has different life experiences than I do, I directly ask them questions about the things that make us different. The question is typically framed very similarly to "what is it like to be...". I'm not implying that their experience is going to be the same as anyone else who is different from me for the reason that they are, because I"m talking to that one person. I think it's potentially damaging to discourage people from arming themselves with knowledge by asking questions directly, and #13 is the most direct way to ask anyone anything about themselves. If someone asked me what it's like to be gay, i'd tell them, and I can't think of any reason why I should be offended.
ReplyDeleteIt's most often the tone and the context that makes this one offensive. I agree that it's good to want to learn more about other people's experiences and perspectives, but if you had just met someone and found out that he or she was Autistic, that's not an appropriate time to ask about that person's life experiences. On the other hand, if you've known someone for a while, that's a different context for asking a close acquaintance or friend about his or her experiences. The tone that can make this one very condescending is a tone that puts the Autistic person under a microscope rather than giving him or her an equal seat at the table, if that makes sense.
DeleteI do not. I think that if a person really wants to know what my experience of living for more than thirty years as an autistic child who became an abused autistic child, then became an abused autistic adolescent, and is now a PTSD-suffering autistic adult, they can learn it for themselves through simple observation. I find it far more productive to convey my experience of life through photography ( https://www.facebook.com/photo.php?fbid=281785741842039&set=a.101010559919559.2095.100000318462315&type=3&theater for example), sharing other peoples' music (eg a DarkThrone song called Rawness Obsolete or just about any Made Out Of Babies song), or pointing out examples from film (the best one being, of course, Blade Runner).
DeleteActually, whilst we are on that subject, Lydia, what do you think about the idea of a list of films/music that better captures the autistic experience than those explicitly promoted as such? I published one years ago on another website that seems to have vanished, and would be happy to update it.
If I need to ask a question, it is usually about a fine detail (one people should ask more often is how being autistic can complicate diabetes management, for instance). Clearly, Anonymous has missed the point that when one knows one autistic individual, they know one autistic individual.
As an Autistic person, I really struggle with the "What's it like to be Autistic" question. It just doesn't make sense to me. Would you know how to respond if someone asked you "What's it like to be Neurotypical?" I can't answer because I've never NOT been Autistic. I have no other experience of being to compare. My Autistic brain affects the way I do and experience everything, all the time, just the way everyone's brain does. So the question itself really doesn't make sense. Someone asked me recently, "So how does autism affect your life?" I could have answered, "Well, I'm Autistic when I wake up in the morning, and all throughout the day, and I'm still Autistic when I go to bed everynight." I was Autistic when I was born, and I'll be Autistic when I die, so I guess it affects my life in that it just IS. I am me and that's that. A more constructive (not necessarily appropriate, depending on the situation, but easier to answer) question would be: What things do you struggle with in daily life? What do you enjoy about being Autistic? How could the world better accommodate you?
DeleteI can perfectly well tell you what it's like to be neurotypical, katie. My world looks like one of those museum rooms that To Cruise wants to break in and that is full of invisible laser beams out to detect him. Only in my world, they are not laser beams, they are bayonets - each one designed to finish me off. Every person may turn out to be a deadly trap. One false word from an ever increasing list of false words, or from a huge catalog of unapproved acts and I'm othered and a non-person. Actually, being neurotypical, I don't have humanity to begin with and everything I could say is just typsplaining. Have you ever considered how incredibly hurful that is? Have you ever considered how hurtful it is that we are just supposed to swallow it up? Well, I better shut up, since I won't be heard anyway . . .
DeleteExcellent post. As the parent of a teen with autism, it enrages me that some people feel the need to ask autistics questions they would never dream of asking their "normal" friends. Would you ask a neurotypical whether he or she takes a certain medication or has sex? I wish people would use their common sense and realize that everyone is entitled to dignity and privacy, and no one else's experience with autism is necessarily applicable to any particular person.
ReplyDeleteLydia, nice job, as usual. I think a lot of what your write applies to people with all kinds of disabilities. Disabled people (and especially people with intellectual impairment) are seen by many as somehow less than fully human. And, therefore, presumably not capable (nor deserving) of enjoying life to the fullest.
ReplyDeleteA lot of this attitude springs, I think, from ignorance, so even though I am taken aback by some of the things you mention, I usually try to educate people about "what it's like to be autistic" (although, of course, I can only speak for myself). Some of the fear/distaste/rejection that people exhibit toward those of us with disabilities comes from an innate warning system about The Other. Our primitive brain flashes a warning flag when we encounter something or someone unfamiliar. That does not mean, however, that we have to follow that into prejudice; we can choose to override that warning with our intellect. That is why awareness and education is so important.
I have a couple of picky points, and would not be doing my *autistic duty* if I did not point them out.
#8: you say, "While every Autistic person may not be able to do these things..." while I think you mean "While not every Autistic person may be able to do these things..."
#11: you use two words that are not commonly understood, I believe, and you don't define them: "stimming" and "triggering" -- I don't much like the concept of "self-stimulation" because I don't think that's accurate. Many people have taken up the phrase "calming behaviors" and I think that better describes the function of these activities. They dissipate nervous energy in a harmless way. As to "triggering" I think I know what you mean, but my hunch is that this word doesn't mean a lot to most people. Just sayin'.
Overall, excellent contribution to the discussion. Thank you.
Enough people have pointed out the placing of the word "not" that I'm going to change it.
DeleteAccurate or not, "stimming" is pretty commonly accepted and defined language in the Autistic and autism communities.
DeleteI liked the fact that my husband alerts me when a new post is up and he thinks I need to drop everything and read it. This was one of those posts. Thank you Lydia.
ReplyDeleteAs a person with Asperger's, I do agree with most of this. But, If a person is trying to understand me, and is asking questions about meds or about how the condition affects me. I think there are people who have a natural curiosity, and are trying to find out what people are like. I don't mind someone who wants to get knowledge of how it affects me and my life, because it means that they are interested in me, and are taking the time to try and understand me. And understanding and acceptance I think are the most important things. And if giving someone a perspective of how it affects me instead of them getting a clinical description from a book helps them to understand what makes me tick, than I am ok with that.
ReplyDeleteI agree with you on that plus I can see the argument from both perspectives. As long as they're asking out of a genuine desire to understand, then I have no problem with it, and I tend to ask people, after establishing a friendship first, similar questions. On the other hand, I was diagnosed with Asperger's & a IQ level that's borderline low (mid 70s) in year 9, so I think that's why I don't see the problem.
Deleteautistic mother of 4 children, 2 have autism. This is amazing what you articulated here. I posted on my fb wall. Thank you so much for sharing.
ReplyDeletethanks for number 6
ReplyDeleteone of the main reasons that i hide my autism from most of my friends is so that i can still have all my lovely friends with benefits. it sucks that so many people assume autistic people are incapable of consenting to or enjoying sex.
Don't kid yourself or us. When push comes to shove, most courts will consider your autism and turn consent into rape. It's only self protection if you stay away from sex with someone on the spectrum - any spectrum.
DeleteI really, really doubt that, given how badly actual rape cases are handled in terms of victim-blaming. Furthermore, even if it was true, way to go, recommending that we compound a mentality based in stigma (presuming incompetence) with avoidance likely to cause more stigma. That's sure to change things for the better. [/sarcasm]
DeleteSo glad that someone is posting anout this. I don't have autism myself but my cousin does and the amount of times people have just said horrid stuff like that just breaks my heart. He's alos only 8 and doesn't understand what they're saying so I end up shouting at them for him. Even one of my friends turned to me once after I had mentioned him in a conversation and said "does that mean your kids could end up being retarded like him?" and i cried because that really was a vicous blow. She's not my friend anymore. Poeple keep posting this!! We need to raise awareness of all the horrid sterotypical people out there!!
ReplyDeleteAs a bipolar, I think this article speaks for many of us. Please don't ask about my drug regime, it is none of your business. Yes, it tells you a lot about where I am on my spectrum, but you really shouldn't care.
ReplyDeleteone thing forget is this people think everyone is autistic but they not. people with autism is very unique we are the most potential of the world future and beside some people bullied us by our disorder. We must be happy what god give us instead for stupid cure of an medical. We must be strong and always loved the stuff we do regard the one people says. For example people tell me to stop liking pool float like beach ball swim ring , and other because my phobia of balloons I always don't what say what I like It's up to me what I like. It just one or two points forget. Please comment me or email my is roynoris@gmail.com for more questions or answers.
ReplyDeleteI am autistic and I have been fortunate enough to have jobs where I have shown that I can do things just as well as someone who isn't austistic. Only in job where I was employed by a major supermarket, I was refused work on the tills as they believed I wouldn't be able to do the job properly. I had, in fact, operated tills in a previous job at Asda. I do find it insulting that employers can add a label to you thinking you may not be able to do the job when you can show them that you can.
ReplyDeleteI wish I could get #11 tattooed on my forehead! People tell me to stop rocking/flapping my hands all the time, and some people even put their hand on me and physically force me to stay in one place. So rude! How would those people like it if others tried to control their natural body language?
ReplyDeleteI find #13 to be false for at least me(I have autism), i find it a very good opportunity to inform them about autism or at least Aspergers what I have.
ReplyDeleteI'm sorry but for me, question #13 is a legit question. I'm an African American woman, and I'd rather someone ask me what it's like being African American than to go on thinking in stereotypes. Of course, I can't speak for all black people but I feel like I can cover what it's like with how most people view black people. It's like loosing a family member. It's painful and while coping may be handled differently by others, we can all relate to the feeling of loss.
ReplyDeleteI have a 4yr old daughter who has Autism (I'm a person who will say she's a person first with a diagnosis of Autism) and I still find myself trying to understand certain things about her. So, I'd rather ask a person than to come up with my own conclusions. Just a thought....
This was the cleverest take on stereotypes I have ever seen: http://uncyclopedia.wikia.com/wiki/Stereotypes
DeleteJust waaaaaay too much OTT "PC" going on here. Unless we ask questions about our differences, we'll never learn to understand each other. :|
ReplyDelete15 is the only one I can relate too. It pisses me off more than anything.
ReplyDeleteThat last one (15) is so very accurate. My parents do this--when talking to each other. Pisses me off so much
ReplyDeleteWhat do you say to an Asperger's person?
ReplyDeleteI really like most of this list but I also completely disagree with #13. By including that one in this list, the overall message becomes "don't talk to someone with Autism since s/he will be insulted no matter what you say."
ReplyDeleteYes, absolutely, that type of question is the way that i show interest in anyone's life experience since nearly everyone loves to talk about themselves. Being Asperger's, it is actually this question of NT's that has saved me tremendously by allowing me to collect data i need to be able to relate to other people. I am so disappointed that it took me until my 40's to learn to ask this type of question. I have no idea what other people are talking about when they say that you wouldn't ask this question of NT's. It's just about the only tool in my kit that i have for making friends.
Perhaps it could be worded a little better (perhaps "So what have you had to do to cope with your Autism in this society?"), but overall i just don't agree.
Referencing Temple Grandin is likely a person's attempt at connecting with another individual. While it may bother a person with Autism, it likely is not done with any ill will. If I learn that someone is a police officer, I will reference my experiences in trying to engage that person. An aggressive reaction to what is likely an innocuous comment could be unnessecarily alienating to a well-intentioned person.
ReplyDeleteIn an ideal world everyone should be sensitive and understand these principles. However, it's also important to realize that people come with all sorts of life experiences (or lack thereof) - and misunderstanding is not a reason to dismiss someone. Perhaps in cases listed above, you could see them as an opportunity to inform, rather than a reason to get upset.
Fantastic piece you have put in words so well what I have tried to explain to others about autism . I have two little boys who have autism ages 8 and 4 yrs old trying to explain to people that the boys have a variety of challenges and strengths that it is to simplistic to try to ' grade ' what autism is. My 8 yr old knows he has autism and accepts it as part of his identity . Thank you for writing this piece
ReplyDeleteI'm turning 35 this year and am just now finding out that I most likely have Aspergers. I was disowned by my adoptive family because of it, and have been denied any relationship with my two kids because of it as well. I'm ashamed to tell any of my friends about this (most of them are a lot younger than me) and have no one to talk to. I don't trust therapists because they're getting paid to pretend you matter for an hour per week and I just despair of ever being loved.
ReplyDeleteThat said, I hate autism. :(
I would like to know if you will write to me at my email address lynntulumello@yahoo.com
DeleteI have a friend who is your age going through the same things. I would love to talk to you.
Something that another person told me once that really hurt:
ReplyDeleteWhy can't you just not behave that way?
If you really are sorry for your behavior (in this case outbursts), you would just stop the behavior. You'd recognize it, and just not do it.
...
Two months later, he maneuvered a conversation to where my buttons were pushed and I yelled at a third party. He got me kicked out of a club for 6 months for it; tried to get me expelled from the club.
...
He said he stopped talking to his autistic brother, because of his brother's inability to properly behave. I suspect his brother is better off, yet still feeling a hole in his life.
What is it like being Autistic?
ReplyDelete(I call myself an Autist, a person who is Autistic; because I am not the condition. An artistic person is an artist.)
Being an Autist, I feel as though I am from another planet. I understand the language, and can communicate with others; however there is just something weird about how my mind works that makes me alien. It isolates me, and makes it difficult for me to function fully with the rest of society.
There is a boy in my college class who I think has Autism. I would like to ask him about his behavior and why he does what he does. He flaps his hands in class. It is very distracting. He has outburst every now and again and sometimes can be down right rude to his classmates. I have a disability myself and I do everything in my power to sit still and not to draw attention to myself.
ReplyDeleteStimming is a real need for Autistic people. It alleviates stress, provides needed sensory input or sometimes does both depending on the circumstance. Telling an Autistic person not to stim can add to their anxiety, because it takes away their coping mechanism. If this is truly a matter of competing access needs, where you can't learn (teach?) while he's flapping, you can perhaps talk to the student about it, making it clear to him that you're not telling him that flapping is bad or wrong but that you can't do what you need to do, and work out some compromise (e.g., alternate stims or him flapping out of sight). If it's distracting only in the sense of being strange and you find it unpleasant on that basis, I'd suggest that you avert your eyes and let him flap.
DeleteThe outbursts may be the result of any number of things, and it's hard to say what it would be without a definition of outbursts. My first reaction is that it might be at least in part caused by sensory distress, as a lot of Autistics have sensory integration or processing problems. This could include things like the lighting conditions in the classroom (are there any flickering lights? Is it too bright?), overlapping or loud sounds, or physical contact (for instance, if the desks or seats are too close together and he gets bumped a lot). Even if these are not the immediate causes of the outbursts, they could be contributing factors, in that sensory distress significantly reduces our ability to handle other sources of stress. Alternately, it may be the result of frustration at the class being taught in an inaccessible learning style (which can include sensory issues, but aren't limited to them). If you're the professor, you may want to look at his class participation, work product and attentiveness during class, as these could also be showing signs of that. It may also be issues external to the class, which may or may not have to do with being Autistic except in that we often don't know how and aren't given the tools to express ourselves until we reach crisis point and it spills over. If this is the case, I strongly recommend proceeding with caution and carefully balancing his privacy and your/your class' need for a safe and respectful learning environment.
What constitutes rudeness? I'm not trying to be obtuse here, but where Autistic "rudeness" can mean serious things like yelling, hitting, destroying property or otherwise harming people but is also used to mean not making eye contact or not making smalltalk with classmates, I think it's a question that needs to be asked. If the rudeness is harmful or threatening to others, or if it's seriously disrupting the learning environment, you should find out why (again, it may be sensory distress or other things that can be addressed through accommodations), work out ways for him to not be rude in those ways, and pursue discipline if it doesn't change after that. If it's stuff like not making eye contact, though, I'd leave it alone. Autistic people can feel subject to so many rules that don't come naturally to us, some of which make little sense, that we either decide screw it, none of it matters, and end up harming people, or we become so boxed in that we forget how to be ourselves. We need some room to be ourselves and to have people meet us halfway. If you do confront him about harmful rudeness, make sure to explain why the conduct is harmful, but don't be patronizing about it, and allow for a dialogue rather than seeming to impose things on him.
4Disabled people are under no obligation to blend in and disguise our disabilities unless the manifestation of these disabilities cause harm to other people or interfere with their access needs. Not drawing attention to oneself has no value either way, positive or negative, and it should be up to an individual disabled person how "out" they want to be about having a disability as long as they're respecting the rights of other people while doing so.
I get stopped by the cops all the time cause im autistic and people think im drunk or on crack or crazy just cause I jump and spin and twitch and yell.......isnt that funny..i guess there just not used to that kind of odd behavior.....but I cant help it
ReplyDeleteKeep being the person you are! Just because you get stopped by the Police, it doesn't mean you're in trouble and you seem to know that. The person who matters most, is YOU. Your 'odd' behavior is only so, because others aren't use to it, it doesn't mean you're abnormal. It only means you're different and difference is good.
DeleteBe Proud to Be You!
Keep smiling and bright blessings :)
this comment may also fall under the category of things that are better left unsaid to people with autism, but for some reason I feel the urge to write it. I have heard that many people with autism find it hard to employ theory of mind, to understand that another person's state of mind may be different then their own - different motives, beliefs, etc. I feel like this blog shows a certain lack of theory of mind. It is titled "15 things you should never say to an autistic" but at times really reads as "15 things people said to me and I didnt like." For example, "you can blog..." or "you have no right to claim to speak for...". Anyway, I think we all have trouble employing theory of mind a lot of the time with varying degrees - hence democrats calling republicans evil and vice versa. I also think some are good at faking it. Great blog Lydia.
ReplyDeleteA lot of Autistic people get told these kinds of things. Not Like My Child and "But you're so high-functioning!" are common derailing/silencing techniques used by neurotypical people to dismiss the viewpoints of Autistic people who speak out against ableism or neurotypical privilege.
DeleteThe theory of mind concept as applied to Autistic people is flawed. This is most easily shown by how little theory of mind neurotypical people employ in dealing with Autistic people, assuming even as they know that we're Autistic that we operate/want to operate in the same ways they do - in terms of social norms, sensory stuff and other things. The only reason that that's not perceived as pathological or problematic is because neurotypicals are the majority.
Thank-you, for his post! My room mate is Autistic and I have most likely subjected her to some form of ignorance in 1 - 15. (I'm pretty sure it was number fifteen.) I'm glad this post is here to enlighten me and others.
ReplyDeleteI really like this and I certainly won't do any of those things now, but what SHOULD I say to an autistic person. So far my method is to treat them like anyone else, is that right?
ReplyDeleteNata: I can't and won't speak for other Autistic people, by as one myself, I find it nice when people treat me as an equal. All we wish is to be accepted for our differences and similarities and treated with the respect we deserve. So yes. Treat us as you would any other person, but please try to remember, that socialising isn't usually a strong point for us and we may say things which could come across differently, to the way we had intended.
DeleteI get asked about maths/science all the time, and I respond with "I dropped out of my science degree and I've got dyscalculia so no, I'm not into maths."
ReplyDeleteThank You! For the post. I wish all NT's would read this.
ReplyDeleteThanks a lot for this Lydia! Even as an Autistic person, I found this useful and an interesting read. I don't get asked or much of these "Don't say to an Autistic person..." things, but it's still worth NT's (NT = Neurotypical = Non-Autistic (In it's basic form) for those who don't know) having a look at this. Again, thanks a lot for this post Lydia. Much respect!
ReplyDeleteBullshit. I just asked those out of nowhere to an autistic friend, and they did not mind any of those at all. When I linked her here she honestly said most of it is bullshit and makes no sense, and the author is stupid.
ReplyDeleteYou do understand that your one friend is not "every single other autistic person out in the world?" It is a shame that she disliked it, but that is only her opinion. I find the list helpful, and have forwarded it others several times.
DeleteSome people are fine with being asked questions, and with educating people who realize how little they know. That's fine. For the most part, however, these are things that you should not ask a random autistic person without knowing, or having a pretty good idea, that they're one of the people okay with being asked questions.
Deletewho the **** is Temple Grandin?
ReplyDeleteI agree with everything said here however one small point on the tone. I would appreciate it if those informing people on the courtesies of speaking and addressing groups equally and kindly would consider that it may be insensitive as well to tell people how they "should" think. Every person comes up with their own experiences and perspectives and has the right to think how they think, do they not?
ReplyDeleteMost people with mental illness work hard and strive to continue a normal life. The autism spectrum is the only group that is not only willing, but encouraged to act like something isn't wrong with them. As a person with Schizophrenia, that managed to come back from the brink and retrain myself, I have to lay this on all of you.
ReplyDeleteYou are not human. You are missing the key things that make someone a human. This means you are mentally retarded/incapable and need to change to adapt to normal ways, not the other way around. Do that or accept you are wild animals that are out of control.
1) There is nothing inherently valuable or human about being normal. Normal is just average. I don't know about you, but I would like to aspire to be better than normal, especially if your post is an example of what "normalcy" is (you were obviously not "retrained" very well if you go about dehumanizing whole groups of people...)
Delete2) Stop being disingenuous. You didn't "have" to say any of this. You did it because you want to. There's a difference.
3) Contrary to your belief that we're encouraged to think the way we do about ourselves, we have to struggle against useless prejudices like yours all the time. You're not saying anything new, controversial or out there.
4) Where the control imposed is irrational, illegitimate and harmful to too many people at too high a cost, being "out of control" is not a bad thing.
5) People told me all kinds of things I "had to" do to "fit in" for fitting in's own sake for the longest time, and I want very few things more than to have no one else experience that, being now on the other side of things where I've come through and excelled as me, not a cookie-cutter person that doesn't know how to be a "me." Your concept of normalcy on the other hand, on top of being nothing special to aspire to, harms too many people with no real tangible benefits at least that I can see.
This was one of the best examples of pointless, hateful trolling I have seen in many months. It is almost artistic in its ignorance of the subject, and nearly musical in its arrogance of viewpoint. Someone should create a touching troll ballet from it.
DeleteWow, I actually can't tell if this is deliberate self-parody or not.
Deleteyou there, with the random string of ascii code for a name, why the hell would you post some shit like this on a website dedicated to autism activism? and with such ableist language to boot! behaving the way everyone wants you to behave isn't being cured, and how someone lives their life is their own business not yours, that's the whole point of this website, to let other autistics know they are not alone, and to teach non-autistics how to be more accepting of people who are their equals.
ReplyDeleteWhy should we strive to change when there isn't anything wrong with us? Autism doesn't compulsorily make you homicidal, it doesn't drive you to steal, it doesn't impair your ability to think, nor does it keep you from having friends, I happen to know the owner of this blog is a very empathic person, why should she force herself to change? and what about calling someone the R word is suppose to make us see your point of view exactly? it's incredibly offensive to anyone with a non-neurotypical brain type and is inexcusable for use, ever, period.
I happen to be living a very full and happy life, completely with significant others and jobs and hobbies, I may not speak very well, or communicate my needs effectively with voice, but that doesn't make me any less of a person
Thanks for posting this! So many comments so I don't think mine will get read -_-...
ReplyDeleteI have NVLD - Non verbal learning difficulties - It's on the autistic spectrum. And half of the time since I have grown up I've never noticed it - unless i'm stressed, busy places , the unknown!
But when I say to people about it they're like - Oh you don't look like you have Autism or they also say Oh I've never noticed before..It's a blessing and a curse.
I wish I could get the guts and say back "Yeah, what do you want me to do to make you notice?" ! People don't notice with me. And now and then even my boyfriend says to me that I don't have to say people that I have it...it's all in the vain hope that they will understand.
But then they come out with alot of the questions on this blog and I go pretty mental inside at them. It's not bad to be curious, just be nice about it!
It's funny even my parents used to put limitations on what I couldn't or could do on my Autism. It used to be "Oh it's because of your NVLD that XYZ is hard for you" - It used to do my head in..
If you see a butterfly, what do you notice first? That it merely flies? Or do you look closer to see the patterns? I just wish some people would look closer and then realise that by asking some things that hurt it damages inside..
Autism or not, I'm myself..and if you want to see the real me, get used to listening about music, art and cats - HINT - Alot of the time! If you can't accept me for who I am and what I've got - well your fault! I tried!
Just my two pennies!
Anyway - thanks for reading
And Thanks for a great article!!!!!!
Thank you for the article. I agree with #15 wholeheartedly. No person should be talked about like they are not there. But I do think the other side of this is being missed. People may not know how to ask the right questions. When people ask ignorant questions it is because they are trying to understand. Instead of tripping about the language someone uses, try to hear their heart. Are they merely trying to understand? If you are a parent of a child who has autism you have become highly educated on the topic and it is easy to forget that other people in the world have not. By asking questions they are trying to become less ignorant. That is an important part of this. We cannot be so sensitive in this world that we stop communication. And, we must learn to listen past peoples words.
ReplyDeletePersonally, I don't mind when people ask me any of those questions except for the "You have no right" question. I have mild autism and am 20 years old. As far as those other questions go, they are not offensive to me. I will be happy to answer them as I know people who ask them (most people that ask those questions anyway) have good intentions and are just very curious.
ReplyDeleteOh and question 15 I agree with too. :)
DeleteWow... the author seems so quick to take offense. Above all, appreciate another's curiousity and the effort to create a connection.
ReplyDeleteI don't agree, I respect your feelings and that is how you would like to be treated, and that's great! I believe the article could be called "how I feel as an autistic individual, 15 things never to say to me please", but obviously it would be arrogant, rude, and insulting to say never say any of those things to autistic people, it would imply we are not individuals who have rights to our own oppinions!
ReplyDeleteAutism is such a broad term - how could anyone imagine we all feel the same? And the comment "any autistic person can speak for themselves" - what? I'm sorry? That MUST be a typo, because you would need to be very ignorant to believe this is so! It must have been "many" or "most" because there are definitly those who can't! And that's ok! I mean REALLY! I hope noone has read that and believed it, you would really be doing the wrong thing if you were Misinforming people about autism! You DO realize how broad the term is? You don't just think it means other people like you, because you're autistic? You share the same way my child brother or I experience the world? Really? How do u know that? We all experience things differently, and you don't even know what form of autism we have. How rude to assume you experience the world the same as me.
I fully respect how you feel about the way you'd like to be treated, it's definitly not how I do! Or my son for that matter! Or my brother! And I also am the first to admit as a child I DID do things that I knew were naughty, hit my sisters while making a certain noise I would also make when I WASN'T in control, and it got to the stage they didnt know when to let me get away with what! Was that evil? No! Another part of my disability? No! It was a child being cheeky and playing on my problems, the same as I have known someone with ADHD to use it to their advantage in highschool. The problem was real, but guess what - sometimes people lie, take advantage, or behave wrongly, and if we have something to blame it on, we Do!
We can be good and bad, openminded and judgmental, we might be accepting or even racist, we may be gay, straight, follow varying political parties, we are INDIVIDUALS.
So yes, I will say it to you : don't presume to speak for ME. People like YOU are telling the world it's ok to feel we are all the same, feel the same, share the same opinions. For all your comments on how we are different and can't tell you what it's like to be autistic YOU JUST WROTE AN ARTICLE ON WHAT AUTISTIC PEOPLE FEEL ABOUT 15 MATTERS!!
I really hope people dont take this to heart, and continue with misinformation, or total ignorance, because they never ask the things theyd like to know! I prefer people to ask me, or make comments like u mentioned, it gives me a chance to educate people on the fact all Autistic people are different, and how it effects me, and I DO ask people about their individualities, when people mention being diabetic, unwell, having mental health issues, pregnancies, discover something unusual about themselfs, etc, and while I prefer to refer to myself as "autistic" when someone comments "you're a person who happens to have autism", I would NEVER be so RUDE as to be offended by someone TRYING to do the right thing, trying to be accepting, I mean what a kick in the teeth? Ok, so they got it wrong by you, how the hell were they to know - we all feel differently! I would say "I really appreciate the effort to make me feel confortable, I am at ease with myself and prefer to be referred to 'this way', but I know there's been a lot of propaganda suggesting we as a group don't like this, and its kind of you to attempt to make me feel comfortable. Just remember we are all different, and prefer different terms!" I mean, what they call you "autistic", some get offended, call us "individuals with autism", others will, and if they ask about our preference, still more will! Are we setting everyone up for a sure fail? And most people make these mistakes because some idiot with autism or whatever disability has stupidly said "we don't like this" like they have the right to speak for us all - thank you for continuing this behavior and speaking for us all.
ReplyDeleteI respect you feel differently, and that's ok. I would never post my opinion here as "this is how we feel as autistic people" - I respect you as an individual! In future please show me the same respect, and at least when you post something like this title it "15 things never to say to ME as an autistic person" or include a line that says "I acknowledge autism comes in many shapes and forms, encompasses a variety of disorders and issues, and that all disabled people are individuals, therefore the opinions expressed in this post do not and can not reflect the opinions or desires of autistic people as a whole."
So yes I will say it again. You have no right to post information like its solid fact representing how autistic individuals feel. And as there ARE many autistic individuals who can't speak for themselves in these or many other situations, please don't insult them by assuming they feel as you do, just because they're unable to tell you otherwise. I CAN speak for myself, and I am saying very clearly, you had no right to post an article implying ALL people with a disability that falls under the label "autism" would rather those 15 things were not said to them. I am entitled to my own opinion, thank you, and I don't want people treating ME a certain way because someone else with a similarly labelled disability presumes to speak for us!
I am glad, as an Autistic with PDD-NOS, that you advocate Autism awareness. I only started learning recently about the struggles of other Autistics because of the fact that my treatment was more geared towards coping, rather than suppressing, Autism. The more I look into and think about this, the more I feel thatwe are being dehumanized (especially the talk about curing Autism. Many of us are proud of being Autistic, and don't want our identities cured). Just saying thank you for your involvement (and I think I'll adopt "ableism" vocabulary because I think it's clever).
ReplyDeleteI like number 6 haha. My boyfriend has always struggled with autism and he always rocks my world.
ReplyDeleteSome people nasked me some of those questions, to be honest i don't care that much about what they ask to me. I try to explain that they should not close autistic people into boxes.
ReplyDeleteThey can ask me almost all of these questions and my caring nature will answer honestly since a lot of autistics are like me and do care about others. ;)
ReplyDeleteAnd if you get to reading this, I think you still need to write something that isn't "non-pretentious" for your "about" page. Just a reminder!
DeleteThank you so much, i have to share this... I don't get offended easily but I would rather not be asked these questions
ReplyDeleteTo the doofus who said 'pity us poor f##ckers who live with people with autism' I say I really feel sorry for anyone who has to live with a
ReplyDeleteselfish asshat like you!
Nobody said autism excuses bad behavior but what is your excuse for yours?
Shaun Neumeier said: "Normal is just average."
ReplyDeleteI disagree. Average is just average, normality is subjective. For example, I'm normal, I just happen to also be Autistic.
@ Autistic Hoya: Check out my responses to those fifteen statements you posted at AO3.
Last month just before my anniversary I discovered my wife has been having an affair. After trying to talk to her about it she moved me out of the house and moved this guy in. On our anniversary no less. She says she loves him and wants to marry him. Says he is so amazing and she has a connection with him shes never felt before. They have been seeing each other now for 3 months and he has lived in our home for the last month. I've found out my wife has had several affairs in the last year. She says she wants a divorce and doesn't want to even try. I truly love my wife and i want her and my kids back. I'm willing to do whatever it takes to win her back. In the last week I was able.to be intimate with my wife once but 10 mins into it she started crying and said she doesnt want to hurt people.i meant an old friend of mine who introduce me to great zuba,he is a great spell caster he was the only one who help me bring back my wife and now i am living with my family and we are all happy again all thanks to great zuba.for those of you who are passing through the same hell with your relationship contact greatzuba@gmail.com and win back your lover.
ReplyDeletehow to get rid of acne scars can be a
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skin cells inside the pore.