24 February 2012

15 Things You Should Never Say To An Autistic

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 mattersIf 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

There could really be a hundred or a thousand of these, but I've decided to choose just fifteen for the sake of brevity and not imploding anyone's browser. All of these things have actually been said to Autistics, children and adults, and some of them are unfortunately very common. Some happen more often over the internet, and some happen more often in person, but they're all phrases or questions that can be incredibly hurtful. Sometimes people who say these things are well-meaning, which can make the impact even worse. Especially in those cases, people might not understand why these can be so offensive and hurtful, and occasionally insist that what they're saying is a compliment, even when it's not.

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.


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

23 February 2012

Six Years

As some of you might know, I have been working on legislation to mandate training about autism for law enforcement and corrections officers in Massachusetts since 2009. It started as an overly idealistic, rather optimistic idea for how to complete my school's requirement that all eleventh grade students merge their interests and abilities with a need in the community in a year-long community service project. This is when I first decided to become involved with the larger autism and Autistic community.

For a very long time, I had wanted a career in law enforcement (in addition to writing crime novels, which I do now), and I decided to explore the overlap of my potential career interest with a part of my identity -- being Autistic. I quickly realized that the vast majority of states do not offer or require training about autism for law enforcement, which has repeatedly led to unfortunate situations, including wrongful deaths, wrongful arrest, exacerbation of sensory problems, and even altercations, all of which could have been avoided had officers been taught to recognize common behavioral and verbal characteristics of Autistic people and to respond with appropriate de-escalation techniques.

In fall 2009, I approached my then State Representative, Katherine Clark, about the possibility of creating legislation to require an autism training program for law enforcement in Massachusetts. By the Spring, I had drafted legislative language, and the bill was filed for the first time as House Bill 4811 in May 2010. Unfortunately, it was a late file (as the session had started in January 2009 and was to conclude at the end of July 2010), and never made it out of committee, which would have been the first step to moving forward in the legislative process. I later learned that that was the first year that a new bill filing system had been introduced, and that many committees were inadvertently uninformed of bills assigned to their committee.

Unfazed by the first fledgling attempt at filing legislation, the bill was refiled in the 2011-2012 legislative session in January, ahead of the filing deadline, in both the House and the Senate. By this time, I had received a few suggestions about the bill's language, and had incorporated them into minor revisions in the text of the bill, now filed as Senate Bill 1197 and House Bill 2909. Katherine Clark was now my State Senator, and the newly elected State Representative for my district, Paul Brodeur, also agreed to sponsor the bill. Very quickly, another Senator, Jim Timilty, and two other Representatives, Denise Provost and Kay Khan, signed their names as co-sponsors. All of this was very exciting.

I anxiously waited for the committee to schedule a date for a hearing -- committees must hold public hearings before a bill can progress in the legislative process. My bill had been assigned to the Joint Committee on Public Safety and Homeland Security, where Senator Clark sits and which Senator Timilty co-chairs. More optimism came my way as the chairs of a legislative committee can often exercise a good amount of influence on the committee's activities and decisions. The hearing was held on 19 May 2011, and several people submitted written or oral testimony in favor of the bill along with my own testimony -- cobbled together at one in the morning the day of the hearing in true student fashion.

After that, progress came to a standstill. I've spent the last nine months waiting to hear word -- any word -- from Senator Clark's office, from Senator Timilty's office, from anyone associated with the committee -- about when the committee could be expected to favorably report the bill from committee and move it forward in the legislative process. At the beginning of the summer, I was told that my bill was one of ten priority bills that the committee intended to report favorably by the end of summer. At the end of August, nine other bills had been reported favorably from committee. Mine had not.

Months passed with other pieces of information -- that the casino debate had taken the bulk of everyone's attention and it would not be addressed until late October; that the House co-chair of the committee, Rep. Harold Naughton, was deployed on active duty, and they wanted to wait for him to return before taking action; that at the beginning of the year (January), they needed to act without Rep. Naughton...

After continual frustration and anxiety, Senator Clark's legislative staffer called me today. My bill was to be included in an omnibus type bill with more general language. I called Senator Timilty's office and spoke to his Chief of Staff less than two hours before writing this. Instead of an omnibus bill, only one piece of legislation (Senate Bill 1258), which was intentionally written with very vague wording, will be released from committee next week. My legislation and some related initiatives around police training programs were to be rolled into S-1258 -- the bill language would not be included, but the bill's history would be amended into S-1258's bill history. My bill is not leaving the Joint Committee on Public Safety and Homeland Security. It is dead, effective today.

Senator Timilty's Chief of Staff told me that I should re-file in the next legislative session, 2013-2014. He said that it's a good idea that will continue to have support. It can't go through, however, because of financial reasons. Massachusetts's police are operating on a deficit, in particular regard with training officers. Such a mandate cannot be funded were it to pass. Even if the autism training program would save money in the long run, there's no money for it now, and thus the bill has been killed.

S-1258 creates a funding mechanism for police training, which Senator Timilty's Chief of Staff told me would hopefully be able to be expanded in the future to allow for additional programs and initiatives, such as a program on autism. The bill's language specifies only that the Municipal Training Committee update its programs. That was, he said, the key phrasing. That's all. No mention of autism, nor of disability in general. They were reassured by the MTC that training programs will be updated to include training on appropriate and respectful interactions with a variety of marginalized groups -- people who don't speak English, people with physical disabilities, people with developmental or intellectual disabilities. But reassurances without the backing of regulations or legislation don't carry much weight with me.

I've heard that it takes an average of six years to pass a bill in Massachusetts. I started this process in 2009, and first filed in 2010. It's 2012. Two-ish years down. Four to go? Maybe more?

I'm a writer, and I can't seem to find the best adjectives to describe my feelings right now. Disappointed is a good one. Frustrated seems too mild. On the verge of crying is on the cliché side. But I'm unable to produce more precise verbiage at the moment, so those will have to do.

Three years, and I'm right back to where I started. Well, this is depressing.

19 February 2012

Autistic (Self) Advocates: What People Think We Do

For those who are wondering, yes, I am in the last picture (bottom right.) This came about after an explosion of this meme all over my Facebook wall, and I decided why not share a public copy.

15 February 2012

The De-legitimization of Autistic Voices

De-legitimization is the process by which voices are silenced through removing their legitimacy. This can be a good thing, for example, when one understands that a Senator who was raised in a wealthy family and is still wealthy today has no legitimacy to express the concerns of the poor, or when one understands that a totalitarian government that represses all opposition and dissidence has no legitimacy for its people, who did not choose and do not want it. Those might be considered positive or constructive examples of de-legitimization.

But for any marginalized community, and for me in particular as an Autistic, de-legitimization can become a frightening and threatening process that occurs nearly constantly. For Autistics, de-legitimization is the name for what happens when people, usually but not always non-Autistics, attempt to remove any legitimacy from the words or opinions of the Autistic person, so that that voice is rendered silent and unheard, so that that voice is not lent credence or granted validity.

There are two major ways that this happens.

The first fallacy is the "not Autistic enough" or "not really Autistic" fallacy. This is the fallacy that assumes that because a person appears to be "high-functioning," has a relatively invisible level of disability, or is assumed to be less disabled that that person is not Autistic or disabled enough to understand more severe disability in Autistic people. Sometimes the ability to write a blog post is conflated with having adaptive functioning skills and life skills such as taking care of one's own hygiene, cooking meals for oneself, transporting oneself, and determining one's own schedule, when in many cases, this is simply not true. Sometimes the ability to write a blog post is even equated with the regular and consistent ability to use oral speech as a means of communication, when this is not always the case.

It is not possible to be more or less Autistic than someone else, but it is possible to be more or less disabled than another Autistic person. And it is true that every Autistic person has a different set of strengths, abilities, challenges, and needs, and that in the context of the society in which we live, some Autistic people are more disabled than other Autistic people. But part of what defines being Autistic is being disabled, and thus it is not possible to be Autistic and to not be disabled. It is impossible to be Autistic and not share in the experiences of the world that bind together those of us who are Autistic. At its core, autism is characterized by key differences in information and sensory processing that typically manifest as communication challenges, social atypicalities, and disability.

Autistic adults, regardless of specific abilities and needs, can relate to other Autistic adults and children on a level that is not quite possible for non-Autistics. That is not to say that an Autistic stranger will understand an Autistic child better than the child's non-Autistic parent -- and certainly not that any random Autistic stranger will love that child in any way that can mirror the parent's love -- but it is to say that because all Autistics share certain common characteristics on the neurological level, it is tragic and unfortunate when anyone dismisses the voice of an Autistic adult on the basis of not being Autistic enough to relate to or understand another Autistic's challenges or needs.

Sometimes the argument is made that if an individual can communicate or express ideas at all, he or she cannot possibly actually be Autistic because of this expressing of ideas, but this is not at all true. Behavior is communication, as Julia Bascom observes so powerfully, and advocacy begins with "no," as Kassiane Sibley knows from personal experience. Extreme challenges with expressive communication do not always mean significant challenges with receptive communication. Inability to speak does not mean inability to sign or point or type -- a few words at a time or entire blog posts. And the use of oral speech does not necessarily mean the effective or pragmatic use of oral speech either.

But this idea of some Autistics as not really Autistic enough or not Autistic at all is not the only fallacy repeatedly used to de-legitimize the voices of Autistic advocates. The other fallacy, in comparison, is almost worse, and possibly even more damaging. This second mistake is the fallacy of dismissing an Autistic's thoughts or ideas because the person is Autistic -- it is the fallacy of "too Autistic to understand." The argument is that an Autistic person is incapable of perspective-taking, understanding circumstances different from his or her own, or empathizing, and that therefore the Autistic person cannot truly appreciate or understand the complexities of a situation, policy, issue, or life. Based on this argument, any Autistic person has no reason to speak, literally or metaphorically, at all -- whether about his or her own life and needs or about issues and ideas that affect all Autistic people and their families.

This argument reeks even more of ableism than the previous one. Most of its assumptions are patently untrue. While Autistics might have significant trouble reading facial expressions or body language, or interpreting tone of voice or other prosodic elements of oral speech, we by no means are incapable of perspective-taking. An inordinate number of Autistics, in fact, continue to play imaginary play games well into adulthood, such as various types of roleplaying games. Other Autistics are writers of novels and short stories and fanfiction. All of these activities require the ability to take different perspectives from one's own, and at a minimum, the roleplaying and fanfiction worlds are often very much niches for Autistics and Autistic Cousins (ACs).

And the myth of lacking empathy is one of the most tragic and ableist myths still rampant in our time. There have been a few studies dissecting this myth that demonstrate that not only do Autistics experience empathy as much as their non-Autistic peers, but in certain circumstances, Autistics on average experience higher levels of empathy.(1) It is well known that Autistics have difficulty interpreting nonverbal communication standard to the subtext of social interactions between non-Autistics; thus, it ought to be no surprise that Autistics may not interpret nonverbal cues that someone is upset or afraid or frustrated or sad or anxious, and then respond in a way that suggests the Autistic is oblivious to the other person's feelings. It's not that the Autistic is oblivious to other people's feelings so much as the Autistic is unable to interpret or analyze the body language or implicit hints to those feelings.(2) Autistic people can make very loyal friends.

The argument that Autistic people are incapable of truly understanding a situation or an issue lacks merit. Of course, it may be that there are individual Autistics who may not understand a particular situation or issue or its complexities, just as there may be individual non-Autistics who may also not understand that same situation or issue or its complexities, but that lack of understanding likely has very little to do with the fact that the individual is Autistic. The idea of self-advocacy, in fact, originated with the intellectual and cognitive disability community rather than with the Autistic community -- these people might represent, to some, the epitome of a person incapable of higher-order thinking and reasoning on the basis of having an intellectual or cognitive disability. But self-advocates with intellectual and cognitive disabilities have repeatedly challenged these assumptions and stereotypes about their capacity to participate in determining not only their own lives but also public policy.

The de-legitimization of Autistic voices only serves to confirm that we still have a long journey to take. Until Autistics can be given equal footing at the table, in the conversations about autism and about us, without repeated inquiries into our fitness to be speaking or to be representing other Autistics, we will not be equal members of society.

If a young Black or African American woman were told she wasn't "black enough" to represent other young Blacks or African Americans, there would be national uproar. If she happened to be so light-skinned she could almost pass for white, and was told that therefore she had no right to call herself Black or African American, much less speak for other Blacks or African Americans, there would be considerable upset. Or if she happened to have lived in the poorest part of St. Louis all her life, dropped out of high school to work to support her family, and never finished her diploma, only to be told that because of her socio-economic and educational status, she wouldn't be able to understand the issues facing and directly affecting her as a young Black or African American woman from a poor part of the country, there would be outrage. Of course she has not personally experienced every possible life experience of every Black or African American in America. Of course her personal triumphs and struggles are individualized and specific to her life. But she has every right to speak as a representative of other people like her.

While those arguments against such a young woman would undoubtedly be the target of much criticism in the public sphere, they exemplify precisely the type of de-legitimization that the ever common fallacies of "not Autistic enough" and "too Autistic to understand" seek to emulate and apply to Autistics with devastating consequences. And it needs to end.

(1) Kimberley Rogers, Isabel Dziobek, Jason Hassenstab, Oliver T. Wolf and Antonio Convit. "Who Cares? Revisiting Empathy in Asperger Syndrome." Journal of Autism and Developmental Disorders. 37(4): 709-715. DOI: 10.1007/s10803-006-0197-8

(2) "Autistic people may, therefore, neither at all be mind-blind nor lack empathy for others, but be hyper-aware of selected fragments of the mind, which may be so intense that they avoid eye contact, withdraw from social interactions and stop communicating. In such a scenario, the world may become painfully intense for autistics and we, therefore, propose autism as an Intense World Syndrome."
Henry Markram, Tania Rinaldi, and Kamila Markram. "The Intense World Syndrome – an Alternative Hypothesis for Autism." Front Neurosci. 2007 November; 1(1): 77–96. Published online 2007 October 15. Prepublished online 2007 September 1. doi: 10.3389/neuro.