Culture of Autism Presentation
I encountered a series of videos recently featuring people with autism who are self-advocates; three different people who fall on the spectrum and bring different experiences. It's so well-done that I decided to post the video links here. All the speakers are adults, which should provide a different perspective than that which is generally presented in the media.
While the main subject of the presentation is the culture of autism, in these clips they discuss growing up with autism, their thoughts on empathy, humor, a cure for autism, and many more subjects, providing multiple perspectives on hot-button subjects (and busting some myths while they're at it). Though I would caution against generalizing from these three people's perspectives, the views presented in these clips are quite eye opening and should help to provide a more well-rounded understanding of autism from a perspective we hear from far too little; persons on the spectrum themselves.
The speakers in the following clips are diverse and include Sondra Williams, an author and mother of four; Judy Endow, MSW, who maintains a private consultation practice and is the parent of three grown sons (one of whom is on the autism spectrum himself); and Dr. Lars Perner, an assistant professor of clinical marketing at the Marshall School of Business of the University of Southern California.
The embedding on the clips was disabled after I made this page, but I feel that this provides such an invaluable resource that I've posted the links below each section. I hope this doesn't discourage you from viewing the videos - feel free to scroll down and choose the clips you find most interesting! If that proves too difficult, I've provided summaries of their answers to questions about life on the spectrum.
While the main subject of the presentation is the culture of autism, in these clips they discuss growing up with autism, their thoughts on empathy, humor, a cure for autism, and many more subjects, providing multiple perspectives on hot-button subjects (and busting some myths while they're at it). Though I would caution against generalizing from these three people's perspectives, the views presented in these clips are quite eye opening and should help to provide a more well-rounded understanding of autism from a perspective we hear from far too little; persons on the spectrum themselves.
The speakers in the following clips are diverse and include Sondra Williams, an author and mother of four; Judy Endow, MSW, who maintains a private consultation practice and is the parent of three grown sons (one of whom is on the autism spectrum himself); and Dr. Lars Perner, an assistant professor of clinical marketing at the Marshall School of Business of the University of Southern California.
The embedding on the clips was disabled after I made this page, but I feel that this provides such an invaluable resource that I've posted the links below each section. I hope this doesn't discourage you from viewing the videos - feel free to scroll down and choose the clips you find most interesting! If that proves too difficult, I've provided summaries of their answers to questions about life on the spectrum.
Question 1:
If there is a culture of autism, are there subcultures within the culture, such as between men and women on the spectrum and those with classic autism, those with high functioning autism, and those with Asperger's?
Watch on YouTube: http://www.youtube.com/watch?v=0u5z3kX7Js0
Summary:
Lars: Yes, there are a number of subcultures. There are huge differences within groups of people on the spectrum, in terms of experiences, perspectives, etc. For this reason, you should not typecast people on the spectrum.
Sondra: There is some separation, but it's not as drastic. Even people on the higher end of the spectrum can relate to and help people on the lower end.
Judy: Giving her explanation in the form of poetry, she says when she acts more like an Aspie than an autie she's more accepted in mainstream society, although she can fit within both populations. Both groups have prices to pay in society, though.
Watch on YouTube: http://www.youtube.com/watch?v=0u5z3kX7Js0
Summary:
Lars: Yes, there are a number of subcultures. There are huge differences within groups of people on the spectrum, in terms of experiences, perspectives, etc. For this reason, you should not typecast people on the spectrum.
Sondra: There is some separation, but it's not as drastic. Even people on the higher end of the spectrum can relate to and help people on the lower end.
Judy: Giving her explanation in the form of poetry, she says when she acts more like an Aspie than an autie she's more accepted in mainstream society, although she can fit within both populations. Both groups have prices to pay in society, though.
Question 2:
For a culture to exist, there has to be communication among members. To what extent and how do individuals on the spectrum communicate with each other, and does this communication drive the culture?
Watch on YouTube: http://www.youtube.com/watch?v=tOecm9odeQM
Summary:
Lars: The internet allows individuals to communicate. People on the spectrum may have difficulties communicating, and these difficulties may impact the way that we view autism.
Sondra: Stimming can communicate just as well as communicating verbally. For those who can't or have trouble communicating, it can be good to be exposed to others on the spectrum who do, because it can supply the strength to keep working towards that goal. Even though people on the spectrum don't always communicate using the same means, they can make themselves understood among each other.
Judy: She says she mostly uses Facebook and email to communicate with friends on the spectrum. Facebook is great because it allows time for responding and increases the number of people she can be friends with (and jokes that the latter is a warning), and says that Facebook/instant messaging/email are ways of communicating more natural to the autistic neurology and may pave the way to development of an autistic culture.
Watch on YouTube: http://www.youtube.com/watch?v=tOecm9odeQM
Summary:
Lars: The internet allows individuals to communicate. People on the spectrum may have difficulties communicating, and these difficulties may impact the way that we view autism.
Sondra: Stimming can communicate just as well as communicating verbally. For those who can't or have trouble communicating, it can be good to be exposed to others on the spectrum who do, because it can supply the strength to keep working towards that goal. Even though people on the spectrum don't always communicate using the same means, they can make themselves understood among each other.
Judy: She says she mostly uses Facebook and email to communicate with friends on the spectrum. Facebook is great because it allows time for responding and increases the number of people she can be friends with (and jokes that the latter is a warning), and says that Facebook/instant messaging/email are ways of communicating more natural to the autistic neurology and may pave the way to development of an autistic culture.
Question 3:
The conventional wisdom in the autism field was that people on the spectrum seemed to lack a sense of humor. It is now well understood that this is not the case. Is there an overall sort of autistic humor?
Watch on YouTube: http://www.youtube.com/watch?v=XBSYkWXHBSA
Summary
Lars: "There's been a lot of research that says we have no sense of humor, so if any of you find anything we've said funny, that probably means that you are a dangerously sick person, too, and you should probably make an appointment with a psychiatrist." (His response is greeted with laughter.) Some people have a dry sense of humor, about themselves, using literal-mindedness to make jokes, etc. There are many subsets of autistic humor.
Sondra: She says she doesn't naturally have a sense of humor but learned, through her public speaking, that sometimes even when she was being very serious people would think what she said was funny. She had to have a neurotypical sense of humor explained to her to understand why they were laughing. But autistic sense of humor makes much more sense to her (which she characterizes as logic, with the addition of an irrational thought).
Judy: She gives an example of autistic humor about the way NTs understand autistic people. "Have you ever noticed how seriously you all talk about accommodations? In the past few years you have become aware of accommodations which is great. I just love it when my NT friends stick up for me and get on their soap boxes about accommodations, and I find it amusing because the way they carry on you'd think they invented the concept of accommodations. The truth is I've known about accommodations my whole life. I've been making lots of them for you as far back as I can remember!" (audience laughs and applauds) "What can I say except we're all glad you finally made it - welcome to our world of accommodations." She goes on to say "I don't know if our sense of humor can be diagnosed autistic - but we are."
Watch on YouTube: http://www.youtube.com/watch?v=XBSYkWXHBSA
Summary
Lars: "There's been a lot of research that says we have no sense of humor, so if any of you find anything we've said funny, that probably means that you are a dangerously sick person, too, and you should probably make an appointment with a psychiatrist." (His response is greeted with laughter.) Some people have a dry sense of humor, about themselves, using literal-mindedness to make jokes, etc. There are many subsets of autistic humor.
Sondra: She says she doesn't naturally have a sense of humor but learned, through her public speaking, that sometimes even when she was being very serious people would think what she said was funny. She had to have a neurotypical sense of humor explained to her to understand why they were laughing. But autistic sense of humor makes much more sense to her (which she characterizes as logic, with the addition of an irrational thought).
Judy: She gives an example of autistic humor about the way NTs understand autistic people. "Have you ever noticed how seriously you all talk about accommodations? In the past few years you have become aware of accommodations which is great. I just love it when my NT friends stick up for me and get on their soap boxes about accommodations, and I find it amusing because the way they carry on you'd think they invented the concept of accommodations. The truth is I've known about accommodations my whole life. I've been making lots of them for you as far back as I can remember!" (audience laughs and applauds) "What can I say except we're all glad you finally made it - welcome to our world of accommodations." She goes on to say "I don't know if our sense of humor can be diagnosed autistic - but we are."
Question 4:
It is widely accepted that individuals with autism do not have empathy. Many of us, however, disagree with this thought. Why do you think that the myth of lack of empathy still exists, and can a culture truly exist without empathy?
Watch on YouTube: http://www.youtube.com/watch?v=xXbREmezSpA
Summary:
Lars: "Many times we have to think more about the experiences of others, so it may not come as intuitively, but we may reach a deeper result."
Sondra: She thinks that a reason the myth of no empathy persists is that autistic people don't always reflect through facial expressions and body gestures in a neurotypical way. But just because they don't mirror what matches our neurotypical experience doesn't mean a lack of empathy. In terms of her own experience, she actually overly feels emotions around her - she says that, "It can actually make me quite sick from feeling everyone else's pain as intensely as if it were my own - I just can't reflect it on my face and outward."
Judy: She replies in poetry form again - here's a brief part: "Please realize your theory of my mind is your theory, not mine. ...Please know, I feel for you, so I'll cut you some slack, knowing you are merely describing what you see when you look at me through your rose colored glasses of your own neurology." She goes on to say that she, too, feels intensely.
Watch on YouTube: http://www.youtube.com/watch?v=xXbREmezSpA
Summary:
Lars: "Many times we have to think more about the experiences of others, so it may not come as intuitively, but we may reach a deeper result."
Sondra: She thinks that a reason the myth of no empathy persists is that autistic people don't always reflect through facial expressions and body gestures in a neurotypical way. But just because they don't mirror what matches our neurotypical experience doesn't mean a lack of empathy. In terms of her own experience, she actually overly feels emotions around her - she says that, "It can actually make me quite sick from feeling everyone else's pain as intensely as if it were my own - I just can't reflect it on my face and outward."
Judy: She replies in poetry form again - here's a brief part: "Please realize your theory of my mind is your theory, not mine. ...Please know, I feel for you, so I'll cut you some slack, knowing you are merely describing what you see when you look at me through your rose colored glasses of your own neurology." She goes on to say that she, too, feels intensely.
Question 5:
Why do some people with autism feel that they are not real people? How can a culture exist when people feel less than human?
Watch on YouTube: http://www.youtube.com/watch?v=o9F--F37NUQ
Summary
Lars: Passes on the question.
Sondra: She blames development, sensory, motor connection, lack of friendships, and bullying for this. When you look at this from a cultural question, that in itself is the culture - people feeling less than human.
Judy: "Autism is an intrinsic part of me and when people want me cured, I come to understand just how despicable I am that large groups of people are spending enormous amounts of time and money in hopes of annihilating me. It contributes to my feeling not quite real as a human being." She says this mutual feeling could actually bring the autism culture together.
Watch on YouTube: http://www.youtube.com/watch?v=o9F--F37NUQ
Summary
Lars: Passes on the question.
Sondra: She blames development, sensory, motor connection, lack of friendships, and bullying for this. When you look at this from a cultural question, that in itself is the culture - people feeling less than human.
Judy: "Autism is an intrinsic part of me and when people want me cured, I come to understand just how despicable I am that large groups of people are spending enormous amounts of time and money in hopes of annihilating me. It contributes to my feeling not quite real as a human being." She says this mutual feeling could actually bring the autism culture together.
Question 6:
What do the terms cure and recovery mean for the culture of autism? Watch on YouTube: http://www.youtube.com/watch?v=Sxy8nztJ89E
Summary:
Lars: He starts by emphasizing that there's no means for cure currently. He would hope that such a cure would leave behind the positive aspects of autism. He can't say we shouldn't fix self-injurious behavior or tell families what to do, but as a matter of pragmatics they should focus on treatments and a cure is currently unrealistic.
Sondra: She questions whether self-injurious behaviors are brought on by autism itself or whether there is a biomedical issue which should be cured separately from the autism. She feels medical issues should not be attached to autism, and a cure for the medical issues should be seen as a cure for autism.
Judy: She looks for people to instead think about supports for autism symptoms. She doesn't want a cure for her autism because she says "It's part of what makes me me. It's part of the nature of my being just as being female is. Autism, just like femaleness, is actually a plus in many ways." She wishes for a culture of acceptance of autistics.
Summary:
Lars: He starts by emphasizing that there's no means for cure currently. He would hope that such a cure would leave behind the positive aspects of autism. He can't say we shouldn't fix self-injurious behavior or tell families what to do, but as a matter of pragmatics they should focus on treatments and a cure is currently unrealistic.
Sondra: She questions whether self-injurious behaviors are brought on by autism itself or whether there is a biomedical issue which should be cured separately from the autism. She feels medical issues should not be attached to autism, and a cure for the medical issues should be seen as a cure for autism.
Judy: She looks for people to instead think about supports for autism symptoms. She doesn't want a cure for her autism because she says "It's part of what makes me me. It's part of the nature of my being just as being female is. Autism, just like femaleness, is actually a plus in many ways." She wishes for a culture of acceptance of autistics.
Learn More
Interested in reading about even more people's perspectives of autism? Try checking out some of the blogs or reading one of the books in Further Resources.