Autism is a mysterious
and puzzling disease, and children who suffer from having been diagnosed with
autism are equally puzzling and mysterious. But the remarkable actions of Joe
Autie can give us valuable insight into the mind with autism. Autie, 32, is a
person who experiences a label of autism, but has overcome his disability and
managed to do something.
Emily Expert, who has never met Autie but has
met other people with autism, and knows countless people who know people with
autism, runs an organization for family members of children with autism.
According to Expert, “This really remarkable thing that Autie has done can help
us all to understand what goes on inside the mind of a child with autism.”
Many people who make their living
talking about autism agreed that it is extraordinary that Joe Autie has done
something in spite of his handicaps. Experts also agreed that it was definitely
Autie’s autism which caused him to do this particular thing. “We can assume that
because one person with autism did this thing, all people with autism are also
drawn to do this thing,” said Dr. Scientist, an autism researcher. “The question
is – why?”
Of course, because autism is such a mysterious affliction, we
may never know truly know why.
How does Joe Autie feel about his
achievement? “We’re very proud of him,” said his mother.
Emily Expert
agrees, but she also cautioned that even though Autie’s actions do, of course,
give us universal insight into the inner worlds of people with autism, we must
be careful that none of those insights are positive in nature.
“This is
a very inspiring story and has a lot to teach us about people with autism,” said
Expert, “but it’s important to bear in mind that the very fact that Autie
managed to do something is evidence of how high-functioning he is. Many children
with autism never manage to do anything. Autie’s actions are extraordinary and
praiseworthy, but they are the exception, and they definitely don’t reflect well
on autism or people with autism as a group.”
----------
So yeah,
that was my best shot at writing an article about autism! How do you think I
did?
Here's why I'm attempting satire: this last week William LeFever, an
autistic hiker who'd gotten lost in the desert, was found by a rescue team. Articles
about this occurrence all featured a sentence like this: "Authorities
credited autism training at least in part for helping them locate LeFever. One
of the rescuers suggested searching near the river because he learned that those
with autism are often drawn to water, reports The Salt Lake Tribune."
We
can all spot the flaws in that logic, right? We all know that there's not
actually any evidence that autistic people are "drawn to water," right? Everyone
understands that LeFever was by the water not because he's autistic but because
humans need water to survive, right?
Right?
The problem is that
autistic people are considered so exotic and mysterious that you can say pretty
much anything about autism in a news article and get away with it.
Showing posts with label note to journalists. Show all posts
Showing posts with label note to journalists. Show all posts
Monday, July 16, 2012
Tuesday, April 10, 2012
Killing Words
[This post was originally published on the ASAN blog.]
Let me present to you a sequence of events.
On March 6th, a 22-year-old autistic man named George Hodgins was murdered in Sunnyvale, California. His mother, Elizabeth, pulled out a gun, shot him point-blank, and then killed herself.
In the following days and weeks, journalists wrote about George Hodgins’ murder. In their articles they called him “low functioning and high maintenance,” and called Elizabeth Hodgins “a devoted and loving mother.” They sought out quotes from other parents of autistic children, who normalized the crime by saying things like “every mother I know who has a child with special needs has a moment just like that.”
People came to comment on these articles. They said that they felt sympathy for the mother. They called her George’s “guardian angel.” They said no one should judge her unless they had walked in her shoes. They said that it wasn’t wrong because he was autistic, and autistic children are hell to raise. They said that it wasn’t wrong because she was obviously responding to a lack of services. (In fact, she had refused services.) They said that it wasn’t wrong because he was disabled, so and his life couldn’t have been very good anyway.
On March 8th, Robert Latimer went on television to talk about how loving and compassionate it was when he gassed his disabled daughter Tracy. He called for “euthanasia” – the murder of disabled children by their parents – to be legalized in Canada. A woman who appeared with him agreed. She has two disabled children who she would like to kill, but she can’t because it is against the law. No opposing viewpoints were presented.
On March 17th, the Autism Society released a statement about “the tragic story of Elizabeth Hodgins,” which “shows that high stress on parents is very common in the autism community.” The statement, signed by both Autism Society presidents, blamed her actions on a lack of services. They also noted that “the divorce rate among parents with a child with autism is as high as 70 percent due to the pressure,” (this is actually a myth that was debunked in 2010). They never even mentioned George’s name.
On March 31st, Patricia Corby drowned her 4 year old autistic son Daniel in the bathtub, in San Diego, California.
***
We need to start looking at these murders as copycat crimes, which are encouraged when murders of disabled people receive positive press coverage. Just as Katie McCarron’s murder followed “Autism Every Day,” Daniel Corby’s murder follows George Hodgins’ murder, and subsequent media coverage which excused, explained away, or even promoted the murder of disabled people by our parents.
When journalists call murderers “loving and devoted parents,” when television shows give Robert Latimer airtime, when parents normalize murder by saying that all special-needs parents have murderous thoughts, the result is an environment in which these murders are seen as acceptable. Media coverage like this sends a message that homicide is a normal, understandable response to any discomfort one might experience while parenting a disabled child, and we can’t pretend that other parents of disabled kids aren’t hearing that message.
***
Let me present to you a sequence of events.
If you wrote an article about George Hodgins’ murder, or if you gave a quote for one, or if you covered it on television, or if you blogged about it, or if you commented on it,
and
if you said that no one should “judge” the murder as wrong,
if you said that Elizabeth Hodgins was “driven to murder” by George’s autism or by “lack of services,”
if you called the murder “understandable,”
if you said “it wasn’t a murder, it was a mercy killing,”
if you said “all parents of special-needs children have felt this way,”
please take a minute to wonder if Patricia Corby heard you.
Let me present to you a sequence of events.
On March 6th, a 22-year-old autistic man named George Hodgins was murdered in Sunnyvale, California. His mother, Elizabeth, pulled out a gun, shot him point-blank, and then killed herself.
In the following days and weeks, journalists wrote about George Hodgins’ murder. In their articles they called him “low functioning and high maintenance,” and called Elizabeth Hodgins “a devoted and loving mother.” They sought out quotes from other parents of autistic children, who normalized the crime by saying things like “every mother I know who has a child with special needs has a moment just like that.”
People came to comment on these articles. They said that they felt sympathy for the mother. They called her George’s “guardian angel.” They said no one should judge her unless they had walked in her shoes. They said that it wasn’t wrong because he was autistic, and autistic children are hell to raise. They said that it wasn’t wrong because she was obviously responding to a lack of services. (In fact, she had refused services.) They said that it wasn’t wrong because he was disabled, so and his life couldn’t have been very good anyway.
On March 8th, Robert Latimer went on television to talk about how loving and compassionate it was when he gassed his disabled daughter Tracy. He called for “euthanasia” – the murder of disabled children by their parents – to be legalized in Canada. A woman who appeared with him agreed. She has two disabled children who she would like to kill, but she can’t because it is against the law. No opposing viewpoints were presented.
On March 17th, the Autism Society released a statement about “the tragic story of Elizabeth Hodgins,” which “shows that high stress on parents is very common in the autism community.” The statement, signed by both Autism Society presidents, blamed her actions on a lack of services. They also noted that “the divorce rate among parents with a child with autism is as high as 70 percent due to the pressure,” (this is actually a myth that was debunked in 2010). They never even mentioned George’s name.
On March 31st, Patricia Corby drowned her 4 year old autistic son Daniel in the bathtub, in San Diego, California.
***
We need to start looking at these murders as copycat crimes, which are encouraged when murders of disabled people receive positive press coverage. Just as Katie McCarron’s murder followed “Autism Every Day,” Daniel Corby’s murder follows George Hodgins’ murder, and subsequent media coverage which excused, explained away, or even promoted the murder of disabled people by our parents.
When journalists call murderers “loving and devoted parents,” when television shows give Robert Latimer airtime, when parents normalize murder by saying that all special-needs parents have murderous thoughts, the result is an environment in which these murders are seen as acceptable. Media coverage like this sends a message that homicide is a normal, understandable response to any discomfort one might experience while parenting a disabled child, and we can’t pretend that other parents of disabled kids aren’t hearing that message.
***
Let me present to you a sequence of events.
If you wrote an article about George Hodgins’ murder, or if you gave a quote for one, or if you covered it on television, or if you blogged about it, or if you commented on it,
and
if you said that no one should “judge” the murder as wrong,
if you said that Elizabeth Hodgins was “driven to murder” by George’s autism or by “lack of services,”
if you called the murder “understandable,”
if you said “it wasn’t a murder, it was a mercy killing,”
if you said “all parents of special-needs children have felt this way,”
please take a minute to wonder if Patricia Corby heard you.
Monday, May 9, 2011
Domestic Hate Murder Coverage Style Guide
(GREAT BIG WARNING: This post deals exclusively with parents who murder their disabled children, and the ableism in media coverage of these murders.)
I woke up this morning to news of yet another autistic child murdered by their parent. In this case, the child is Glen Freaney, whose mother is currently on trial for strangling him last May. As usual, the grief I felt for Glen was aggravated by rage at the deeply ableist way his murder was covered in many of the articles I read. I have written before about journalists' tendency to express sympathy for parents who murder their disabled children. This time, I decided to take a new approach.
Since it is apparently very difficult for journalists to write respectfully about disabled children whose parents have murdered them, I took it upon myself to create this style guide. If you are a journalist about to begin covering one of these cases, please take these simple tips to heart:
DO NOT write that the victim “suffered from” their disability. Not only is this incorrect terminology, but it is very inconsiderate when in this case what the person really suffered from was being the child of a murderer.
DO talk about who the victim was as a person. What did they like? What were their hobbies? What were they struggling with? Did they like ice cream? What was their favorite color? If you don’t have enough space in the article to talk about the person whose murder you are covering, I recommend that you make room by cutting the obligatory paragraph where you write in horror about how they still wore diapers when they were killed, or how they would have needed 24-hour care for the rest of their life, as if these things were mitigating factors in the crime. It’s not wrong to write bluntly about the victim’s disability, but it absolutely is wrong to use the facts of the victim’s life to garner sympathy for the murderer.
DO NOT ask the readers to put themselves in the shoes of the murderer. DO NOT prominently feature the same old interviews by double-talking fellow-parents-of-disabled-children, who say that while they cannot excuse the murderer’s action, they can understand it. DO NOT seek opinions from experts on the suffering of murderous parents. DO NOT end your piece on a “thoughtful,” “balanced,” note in which you ask a provocatively open-ended question about whether society should really hold the murderer to blame for killing their own child.
DO interview the same people that you would usually interview in a murder case – the victim’s friends, teachers, faith leaders, whatever. Oh, you can also interview those of the victim’s family members who didn’t think that killing them was an awesome idea.
DO NOT lay this corpse at the feet of the special education system, or Medicare, or SSI. There are plenty of problems with each of these systems for you to investigate in detail. Please, do an exposé or five on how this country doesn’t adequately care for its disabled citizens. But DO NOT state or imply that the natural, logical consequence of these failed systems is child murder. If you want to link this specific tragic event to a larger societal ill, DO critique the ableism in a society where child murderers can find sympathy if their victims meet the right requirements.
DO use the phrase “hate crime” where appropriate. DO NOT FUCKING DARE refer to the murder as the desperate act of a loving parent. DO NOT try to tug the reader’s heartstrings with paragraphs upon paragraphs detailing the murderer’s worries for their child’s future. DO remember that if the murderer was concerned about their child’s future, they would not have prevented their child from having one.
DO remember as you write this article that when a parent murders their child, this is a bad thing.
I woke up this morning to news of yet another autistic child murdered by their parent. In this case, the child is Glen Freaney, whose mother is currently on trial for strangling him last May. As usual, the grief I felt for Glen was aggravated by rage at the deeply ableist way his murder was covered in many of the articles I read. I have written before about journalists' tendency to express sympathy for parents who murder their disabled children. This time, I decided to take a new approach.
Since it is apparently very difficult for journalists to write respectfully about disabled children whose parents have murdered them, I took it upon myself to create this style guide. If you are a journalist about to begin covering one of these cases, please take these simple tips to heart:
DO NOT write that the victim “suffered from” their disability. Not only is this incorrect terminology, but it is very inconsiderate when in this case what the person really suffered from was being the child of a murderer.
DO talk about who the victim was as a person. What did they like? What were their hobbies? What were they struggling with? Did they like ice cream? What was their favorite color? If you don’t have enough space in the article to talk about the person whose murder you are covering, I recommend that you make room by cutting the obligatory paragraph where you write in horror about how they still wore diapers when they were killed, or how they would have needed 24-hour care for the rest of their life, as if these things were mitigating factors in the crime. It’s not wrong to write bluntly about the victim’s disability, but it absolutely is wrong to use the facts of the victim’s life to garner sympathy for the murderer.
DO NOT ask the readers to put themselves in the shoes of the murderer. DO NOT prominently feature the same old interviews by double-talking fellow-parents-of-disabled-children, who say that while they cannot excuse the murderer’s action, they can understand it. DO NOT seek opinions from experts on the suffering of murderous parents. DO NOT end your piece on a “thoughtful,” “balanced,” note in which you ask a provocatively open-ended question about whether society should really hold the murderer to blame for killing their own child.
DO interview the same people that you would usually interview in a murder case – the victim’s friends, teachers, faith leaders, whatever. Oh, you can also interview those of the victim’s family members who didn’t think that killing them was an awesome idea.
DO NOT lay this corpse at the feet of the special education system, or Medicare, or SSI. There are plenty of problems with each of these systems for you to investigate in detail. Please, do an exposé or five on how this country doesn’t adequately care for its disabled citizens. But DO NOT state or imply that the natural, logical consequence of these failed systems is child murder. If you want to link this specific tragic event to a larger societal ill, DO critique the ableism in a society where child murderers can find sympathy if their victims meet the right requirements.
DO use the phrase “hate crime” where appropriate. DO NOT FUCKING DARE refer to the murder as the desperate act of a loving parent. DO NOT try to tug the reader’s heartstrings with paragraphs upon paragraphs detailing the murderer’s worries for their child’s future. DO remember that if the murderer was concerned about their child’s future, they would not have prevented their child from having one.
DO remember as you write this article that when a parent murders their child, this is a bad thing.
Saturday, April 16, 2011
Headlines: Abuse and Empathy
(WARNING: this post discusses child abuse)
We are two weeks into Autism Awareness Month and I count three casualties so far. Two stories in the news this week, of three autistic children murdered or abused by their parents and caretakers.
In Washington, two autistic boys (ages 5 and 7) were discovered locked in a cage, where their father and his fiancee kept them every day, in unsanitary conditions. They weren't allowed to walk around the house or to go to school. I don't know their names. Their father, John Eckhart, told police: "What am I supposed to do? Let them run around the house? They're autistic."
In Massachusetts, Kristin LaBrie was found guilty of "attempted murder, assault and battery on a disabled person and a child, and child endangerment," after she withheld chemotherapy drugs from her 9-year-old autistic son, Jeremy Fraser. This actually happened years ago, but was in the news again this week because of the sentencing. Jeremy was non-verbal and had lymphoma (blood cancer). He had been getting treatment at a local hospital, and his cancer was in remission. When he was moved home from the hospital, doctors gave his mother medication to give to him, and predicted that he would recover. But LaBrie did not administer the drugs, and Jeremy's cancer recurred, this time as leukemia. Jeremy died in March 2009. This week, LaBrie was sentenced to 8-10 years in jail, and 5 years on probation.
These are only the cases which have made it into the news this week. There are many more autistic people out there, right now, facing abuse and neglect in their homes, in their schools, in institutions. Their suffering is being permitted, hidden, or ignored.
Autism "experts" have already spoken up, defending the parents involved in these two cases. Neatha Lefevre, of the Autism Society of Washington, presented a stunningly sunny picture of the Oregon case. She told reporters: “The behaviors [of an autistic child] can be very challenging." Referring to Eckhart, who kept his sons in a dirty cage, she said, "When [parents] do this extreme, they feel this is the safest way to keep their children. The family will choose extremes because they don’t have good information.”
As for the Massachusetts case, apparently even the prosecutor "[expressed] sympathy for the challenges of caring for a sick, disabled child." TIME Magazine ran an article which began by asking readers to place themselves in Kristin LaBrie's shoes: "Imagine you are a single mother suffering from depression, overwhelmed with caring for an autistic, nonverbal and developmentally disabled son. If he were diagnosed with cancer, what would you do?" The article quotes a Boston-area attorney as saying:
"It can be so overwhelming for a single parent to deal with a child who is autistic, nonverbal, and developmentally delayed. It is cruel to add to that burden a diagnosis of cancer and a requirement that the mom administer medicine that will cause the child even more pain."
TIME also quotes medical ethicist Cynthia Rushton, whose take on a mother withholding life-saving drugs was: "I suspect this mother was really trying to do the best she could for him... what does it mean to be a good parent in this circumstance?" The article's author writes, "Was justice done? It's hard to know. Certainly, disabled children have rights. But moms do too, and it appears that LaBrie did not have adequate support."
As with most cases in which a parent abuses or murders a disabled child, there are a lot of voices urging us to feel empathy for the parent, to imagine how hard it is to have an autistic child. As far as I know, these "experts" have yet feel empathy for the child, to imagine how hard it is to be an autistic child with abusive or murderous parents.
Meanwhile, former PBS news anchor Robert MacNeil is returning to television with a special report called Autism Now. In a promotional interview, MacNeil described autism this way:
"It delays the most -- delays or impairs for life -- the most human thing we have, which is our ability to look into each others eyes and feel that other person's existence and what might be going on in their mind, and to empathize with them. That is denied -- largely denied -- to children with autism."
Rachel Cohen-Rottenberg addresses this claim with an open letter, posted here.
Every day, autistic people are being murdered and abused by people who are supposed to provide them with love and care. And every day, people tell each other that autistic people are the ones who lack empathy, never pointing out that often, it is neurotypical people who do not have empathy for us.
Let's take a moment to remember the connection between people who speak about us as though we are not human and people who treat us inhumanely.
We are two weeks into Autism Awareness Month and I count three casualties so far. Two stories in the news this week, of three autistic children murdered or abused by their parents and caretakers.
In Washington, two autistic boys (ages 5 and 7) were discovered locked in a cage, where their father and his fiancee kept them every day, in unsanitary conditions. They weren't allowed to walk around the house or to go to school. I don't know their names. Their father, John Eckhart, told police: "What am I supposed to do? Let them run around the house? They're autistic."
In Massachusetts, Kristin LaBrie was found guilty of "attempted murder, assault and battery on a disabled person and a child, and child endangerment," after she withheld chemotherapy drugs from her 9-year-old autistic son, Jeremy Fraser. This actually happened years ago, but was in the news again this week because of the sentencing. Jeremy was non-verbal and had lymphoma (blood cancer). He had been getting treatment at a local hospital, and his cancer was in remission. When he was moved home from the hospital, doctors gave his mother medication to give to him, and predicted that he would recover. But LaBrie did not administer the drugs, and Jeremy's cancer recurred, this time as leukemia. Jeremy died in March 2009. This week, LaBrie was sentenced to 8-10 years in jail, and 5 years on probation.
These are only the cases which have made it into the news this week. There are many more autistic people out there, right now, facing abuse and neglect in their homes, in their schools, in institutions. Their suffering is being permitted, hidden, or ignored.
Autism "experts" have already spoken up, defending the parents involved in these two cases. Neatha Lefevre, of the Autism Society of Washington, presented a stunningly sunny picture of the Oregon case. She told reporters: “The behaviors [of an autistic child] can be very challenging." Referring to Eckhart, who kept his sons in a dirty cage, she said, "When [parents] do this extreme, they feel this is the safest way to keep their children. The family will choose extremes because they don’t have good information.”
As for the Massachusetts case, apparently even the prosecutor "[expressed] sympathy for the challenges of caring for a sick, disabled child." TIME Magazine ran an article which began by asking readers to place themselves in Kristin LaBrie's shoes: "Imagine you are a single mother suffering from depression, overwhelmed with caring for an autistic, nonverbal and developmentally disabled son. If he were diagnosed with cancer, what would you do?" The article quotes a Boston-area attorney as saying:
"It can be so overwhelming for a single parent to deal with a child who is autistic, nonverbal, and developmentally delayed. It is cruel to add to that burden a diagnosis of cancer and a requirement that the mom administer medicine that will cause the child even more pain."
TIME also quotes medical ethicist Cynthia Rushton, whose take on a mother withholding life-saving drugs was: "I suspect this mother was really trying to do the best she could for him... what does it mean to be a good parent in this circumstance?" The article's author writes, "Was justice done? It's hard to know. Certainly, disabled children have rights. But moms do too, and it appears that LaBrie did not have adequate support."
As with most cases in which a parent abuses or murders a disabled child, there are a lot of voices urging us to feel empathy for the parent, to imagine how hard it is to have an autistic child. As far as I know, these "experts" have yet feel empathy for the child, to imagine how hard it is to be an autistic child with abusive or murderous parents.
Meanwhile, former PBS news anchor Robert MacNeil is returning to television with a special report called Autism Now. In a promotional interview, MacNeil described autism this way:
"It delays the most -- delays or impairs for life -- the most human thing we have, which is our ability to look into each others eyes and feel that other person's existence and what might be going on in their mind, and to empathize with them. That is denied -- largely denied -- to children with autism."
Rachel Cohen-Rottenberg addresses this claim with an open letter, posted here.
Every day, autistic people are being murdered and abused by people who are supposed to provide them with love and care. And every day, people tell each other that autistic people are the ones who lack empathy, never pointing out that often, it is neurotypical people who do not have empathy for us.
Let's take a moment to remember the connection between people who speak about us as though we are not human and people who treat us inhumanely.
Monday, April 4, 2011
Autism Awareness Month (Self-Advocacy Remix)
So, April is Autism Awareness Month. This is, unsurprisingly, a month dedicated to making neurotypical people (people who don't have autism or other brain disabilities) aware of autism. Like any other time when a lot of people are talking about autism, the opinions of actual autistic people often get ignored. So here are some things that I, as an autistic person, would like non-autistic people to be aware of during Autism Awareness Month.
1. Discussions about autism should prominently feature the thoughts and opinions of autistic people.
Just like discussions about women should center around women, and not, you know, their husbands, brothers, fathers, boyfriends, and any other men in their lives. If you can't understand why someone who has a particular disability (or any other kind of identity, for that matter) would know more about it than someone who doesn't, then I don't know what to tell you.
If you want to learn more about autism, watch "In My Language." Read "Don't Mourn For Us." Don’t trust people who don’t have the experience of being autistic to tell you all about us.
2. Yes, autistic people have feelings.
Again, I think this is pretty obvious, but a lot of people tend to think we don't feel emotion. So for the record: we have feelings. If we don't express those feelings the same way as other people, that does not mean they are not there. If we don't or can't communicate those feelings to you, that also does not mean they are not there.
3. Autistic people also have empathy.
A lot of people believe that autistic people do not experience empathy for others. In my opinion, this is due to a) prejudice and/or b) confusion about the psychological-technical definition vs. the commonly-used definition of empathy. We don't lack the ability to share other people's pain or happiness, which is how the word "empathy" is commonly used. What many of us do lack is the ability to tell what someone else is thinking or feeling without them telling us. I don't really think this is a big deal because it wouldn't even be a problem if people told other people what they were thinking or feeling instead of trying to make other people figure it out telepathically. This would make communication easier for everyone, including neurotypical folks.
4. Autism isn't [just] a social disability.
It has lots of other components, including cognitive differences, gross and fine motor problems, executive dysfunction, special interests and obsessions, and sensory issues. Focusing on the social problems that autistic people encounter leads to a very inaccurate understanding of autism. It also places too much blame on autistic people for the social ostracism we encounter, a lot of which comes from ableism. For more on the “social skills” issue and why it is messed up, read this.
5. The medical model is not a great way of thinking about autism.
Taking a medical-model approach means viewing autism as a disease in need of a “cure.” According to this view, a person has autism the same way they might have the flu – it’s an illness afflicting them, not an integral part of their personality. This is why people say things like “I want to bring my child out of autism” – because they genuinely believe that inside every autistic person is a normal person waiting to get out.
The reality is that autism doesn’t work that way. It’s built into our brains, and though each person’s brain grows and changes as they get older, we will always be autistic. This is who we are, and a lot of us are just fine with that. Therefore…
6. Having a passionate interest in making sure that no more autistic people exist is actually kind of offensive.
Seriously, think about this one. Think about an identity that you have, something important, something that makes you who you are. Now imagine how you would feel if there were lots of widely-respected groups devoted to making sure that no one who fit that description, no one like you, would ever be born again. This is one of the reasons that so many of us oppose research into the causes of autism: even though finding out more about the human brain is usually really awesome, in this case we fear any research into cause would just lead to a prenatal test for autism, and thence to ability-selective abortions.
7. Passing is not necessarily the best thing for autistic people to do.
A lot of early-intervention therapies for autism focus on getting rid of “weird” autistic behaviors and training children to act more normal. If these children then master the art of conformity and go on to become “indistinguishable” from their neurotypical peers, this is regarded as a great success. But few professionals consider the effect on autistic people of having to hide who we are and present ourselves in a way that feels inauthentic. In fact, though passing may open doors for us that would normally be closed, it often comes at a great psychological cost.
For the most part, people think nothing of asking autistic people to change everything about themselves in order to meet the demands of neurotypical society. But they rarely consider that it is also possible to change those societal demands in order to include autistic people.
I don’t quite understand the meaning of “awareness” in Autism Awareness Month. It’s incredibly rare to meet someone who is unaware of the existence of autism. However, I encounter myths and misinformation about autism wherever I go. I think this is as far as “awareness” can progress when the conversation surrounding a minority group is controlled by the majority. Of course neurotypical people can still contribute valuable insights related to autism – but only we can speak about it from experience. If your goal this April is to become truly aware of the realities of autism, you’re going to have to listen to what we have to say.
1. Discussions about autism should prominently feature the thoughts and opinions of autistic people.
Just like discussions about women should center around women, and not, you know, their husbands, brothers, fathers, boyfriends, and any other men in their lives. If you can't understand why someone who has a particular disability (or any other kind of identity, for that matter) would know more about it than someone who doesn't, then I don't know what to tell you.
If you want to learn more about autism, watch "In My Language." Read "Don't Mourn For Us." Don’t trust people who don’t have the experience of being autistic to tell you all about us.
2. Yes, autistic people have feelings.
Again, I think this is pretty obvious, but a lot of people tend to think we don't feel emotion. So for the record: we have feelings. If we don't express those feelings the same way as other people, that does not mean they are not there. If we don't or can't communicate those feelings to you, that also does not mean they are not there.
3. Autistic people also have empathy.
A lot of people believe that autistic people do not experience empathy for others. In my opinion, this is due to a) prejudice and/or b) confusion about the psychological-technical definition vs. the commonly-used definition of empathy. We don't lack the ability to share other people's pain or happiness, which is how the word "empathy" is commonly used. What many of us do lack is the ability to tell what someone else is thinking or feeling without them telling us. I don't really think this is a big deal because it wouldn't even be a problem if people told other people what they were thinking or feeling instead of trying to make other people figure it out telepathically. This would make communication easier for everyone, including neurotypical folks.
4. Autism isn't [just] a social disability.
It has lots of other components, including cognitive differences, gross and fine motor problems, executive dysfunction, special interests and obsessions, and sensory issues. Focusing on the social problems that autistic people encounter leads to a very inaccurate understanding of autism. It also places too much blame on autistic people for the social ostracism we encounter, a lot of which comes from ableism. For more on the “social skills” issue and why it is messed up, read this.
5. The medical model is not a great way of thinking about autism.
Taking a medical-model approach means viewing autism as a disease in need of a “cure.” According to this view, a person has autism the same way they might have the flu – it’s an illness afflicting them, not an integral part of their personality. This is why people say things like “I want to bring my child out of autism” – because they genuinely believe that inside every autistic person is a normal person waiting to get out.
The reality is that autism doesn’t work that way. It’s built into our brains, and though each person’s brain grows and changes as they get older, we will always be autistic. This is who we are, and a lot of us are just fine with that. Therefore…
6. Having a passionate interest in making sure that no more autistic people exist is actually kind of offensive.
Seriously, think about this one. Think about an identity that you have, something important, something that makes you who you are. Now imagine how you would feel if there were lots of widely-respected groups devoted to making sure that no one who fit that description, no one like you, would ever be born again. This is one of the reasons that so many of us oppose research into the causes of autism: even though finding out more about the human brain is usually really awesome, in this case we fear any research into cause would just lead to a prenatal test for autism, and thence to ability-selective abortions.
7. Passing is not necessarily the best thing for autistic people to do.
A lot of early-intervention therapies for autism focus on getting rid of “weird” autistic behaviors and training children to act more normal. If these children then master the art of conformity and go on to become “indistinguishable” from their neurotypical peers, this is regarded as a great success. But few professionals consider the effect on autistic people of having to hide who we are and present ourselves in a way that feels inauthentic. In fact, though passing may open doors for us that would normally be closed, it often comes at a great psychological cost.
For the most part, people think nothing of asking autistic people to change everything about themselves in order to meet the demands of neurotypical society. But they rarely consider that it is also possible to change those societal demands in order to include autistic people.
I don’t quite understand the meaning of “awareness” in Autism Awareness Month. It’s incredibly rare to meet someone who is unaware of the existence of autism. However, I encounter myths and misinformation about autism wherever I go. I think this is as far as “awareness” can progress when the conversation surrounding a minority group is controlled by the majority. Of course neurotypical people can still contribute valuable insights related to autism – but only we can speak about it from experience. If your goal this April is to become truly aware of the realities of autism, you’re going to have to listen to what we have to say.
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Autism Awareness Month,
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note to journalists,
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