Asperger Square 8

Square Talk: The Social Model

2009-10-27T10:44:00.004-04:00

A Job Interview

2009-10-22T01:22:00.001-04:00

Instead

2009-10-14T23:31:00.004-04:00

You want to be helpful. Really. Useful. You were surprised, recently to find yourself finally seeing it, the harm that is done by groups like Autism Speaks. That video, that disembodied voice, Big Scary Voice and its claims of destruction, you saw this time how these omnipresent repetitions build a world where autistic people and people with other disabilities are shunned, marginalized, treated in so many ways as less than human. Less than real. You get it now. But what about that walk coming up? What about that inbox filling with walks and runs and bake sales and pledge drives and other pleas for contributions? These have been ways to express your concern for...I don't know...something about autism? Someone you know?

It's harder now, maybe, to know what to do, now that you've seen how one large and powerful group monopolizes the public attention, drains it, until the stream of misinformation is absorbed unquestioned, unnoticed even. It's harder now, and that's a good thing.

Here are some options to consider while you are not "walking for autism."

Make a contribution to an organization for autistics by autistics. Autistics.org always needs support. ASAN is another option.
Contribute to another disability rights organization.
Donate money or time to a homeless shelter or food bank in your area. The unemployment rate for autistic people is extremely high, more so even than the rate for people with disabilities in general. There are many autistic people living on the streets and in shelters.
Sponsor a registration at Autreat for someone who would not otherwise be able to go.
Read more blogs by autistic people. There are some folks out there who are struggling. A word of encouragement might make a difference to someone who is desperate.
Lobby for an end to seclusion rooms and restraints in schools.
Challenge inaccessible spaces, wherever you find them.
Invest in companies that include people with disabilities in key roles.
When you see someone being bullied or harassed, intervene. It is not enough to just not actively participate.
Invite an autistic person to lunch.
If the person agrees, then have lunch. Talk. Listen.
Listen.
This might take a long time. Listen more.
Consider expanding your definitions of words like "listening," "speaking," and "communication."
Repeat as needed.

Thank you for your contribution.

The Daily Squawk: Redefining Canines

2009-10-06T11:51:00.009-04:00

Canine Advocates Urge Removal of Pomeranian, Shih Tzu, Others from the Dog Spectrum

Should all dogs be considered equally doglike? Well known canine advocate Darrell Hogarty doesn’t think so. “People who live with some of these smaller breeds have become too vocal,” he explains. Hogarty believes that the enthusiasm of small dog aficionados obscures the problems of real dog owners. “They claim they can live in apartments and condos. The general public is starting to think that dogs like my Rotweiller don’t need large fences to keep them from bolting.” What’s worse, Hogarty says, is that the claims of small dog owners that food costs and training needs are manageable may keep the owners of real dogs from receiving the services they need.

People are starting to think that dog ownership is some sort of ‘cutesie club.’ It’s anything but that,” adds the canine advocate who prefers to be known only as WTF. “It’s not that I have anything against them. I have a toy poodle myself, but I can tell you he’s no dog! My Saint Bernard goes through a large bag of Purina Dog Chow each week. Who can afford that?”

Poop is a major problem for the owners of real dogs, too. Canine advocates point to the statistics or rumors indicating that nearly 80% of canine affected marriages fail due to arguments over whose turn it is to scoop the yard. “I’d like to invite any of these diversity loving types to come over and give my dog a bath,” declared WTF. “But you don’t see the Dawgz R Lovely crowd lining up to give it a try, do you?”

Those who prefer keeping small dogs as part of the spectrum are quick to point out that the Chihuahua’s bark can be as disturbing as that of a Weimaraner. Small dogs sometimes bite, too, explain diversity advocates, some of whom reject the words “pet” and “owner” in favor of more radical terms like “companion.”

Claims that size shows no correlation with ease of training do not impress Hogarty, for whom defining a dog is a simple matter. “It’s just common sense. Is it bigger than a dirt bike? Can it be used to scare people? That’s a dog.”

Hogarty adds that removing these smaller, cuter breeds from the current definition of “dog” could go a long way toward solving the canine overpopulation problem. “Of course their numbers should still be counted when new pounds and shelters need to be built,” he added. “We ought to get some use out of them, eh?”

************

All kidding aside, there are many dogs and other animals in need of homes. If you are thinking of sharing your life with an animal, please consider adopting, not purchasing from a store or breeder. Spay or neuter your pets, and if you are able, please consider a tax deductible donation to American Animal Rescue Society. AARS depends on its volunteers and foster homes; 100% of donations go to animals in their care.

For You

2009-09-29T11:10:00.010-04:00

For Bruce

You said, "Here's your mirror and your ball and jacks."
But they're not what I came for,
and I'm sure you see that too.
-For You

So many times, there were no words, but swirls of emotion, pattern and image. Thoughts and feelings demanded saying, but I was mute. The other looked on with anticipation, then curiosity, then pity. Finally, I’d disappear from view. The other would move on to other others, those who communicated freely the complexity of longings within them. Sometimes there would be someone more patient, more able to see. When I had spent the few words I could muster, I would choose just the right vinyl disc from my collection, the one with words and music to pull up what I meant. For years, all through my late teens and twenties, this was the way I could say. I spoke with their voices, imperfect, but useful. Once in awhile, I think, someone heard. I was less alone then, and sometimes a more standard seeming conversation would start, triggered by the words I found or by questions of the other. Words that lent themselves to echolalic use. Sometimes the words were yours.

When I'm out in the street
I walk the way I wanna walk
When I'm out in the street
I talk the way I wanna talk.
-Out on the Street

This is not a fan letter. I played those records down to nothing. The stereo’s tone arm didn’t lift anymore when it came to the end, and I had to grab it quickly before it skipped backward, leaving deep scratches across your words. Yes, it needed fixing or replacement, but I didn’t do those things. I lived with things that were broken, choosing the inconvenient solution over and over in preference to a trip to the repair shop. Sometimes lighter scratches created an infinite loop of feedback, a word or phrase sung over and over, more mine than ever.

I never walked quite like the others and you told me this was okay. The words told me there were others like me. Invisible.

I wanna find one face
that ain't looking through me,
I wanna find one place,
I wanna spit in the face of these badlands.
-Badlands

There are some who think it’s the other way around. That autistic people are not completely “there.” I have been accused, but from this side of the neurological fence, it looks a little different. No one saw me. No one saw me. Sometimes this was okay, was for the best, actually. Invisibility felt safe, better than the alternative, usually disdain, criticism, anger, or worse. In the long run, it’s no way to live.

Imagine a group claimed your voice, but allowed you no say. They used your name to spread propaganda, and this propaganda made your life harder, all the while they claimed to exist for your benefit. This is the truth about Autism Speaks.

But there's this angel in her eyes
That tells such desperate lies
And all you want to do is believe her.
-She’s The One

One celebrity after another joins. They mean well, I think. People who have the money and fame. The cultural capital that can result from the human need to identify with something larger. It is a powerful urge, the need to join something.

You have been a part of my life for so long. I want to believe you meant me no harm.

Well darlin' can you understand
The way that they will turn a man
Into a stranger to waste away
-Jackson Cage

The folks who run Autism Speaks are sure that autism is a terrible thing, that it must be eliminated. The stated goal is a world where autism is nothing but “a word for the history books.” Autistic people are never consulted about the decisions being made by this powerful group. Those who defend Autism Speaks will tell you that people with “real autism” can not speak for themselves. Some will go so far as to say that these “real” autistics cannot communicate at all.

I do not believe this. I do not believe that there are human beings who do not communicate. I know, though, that there are many who have not learned to listen to ways of communication that are non-standard. It becomes far too easy to impose one’s own will on others. To say, This is autism; this person cannot speak, cannot reason. To say This is not autism; this person has no right to be included. Just like that, all of the power in the hands of others. The others are not autistic, but somehow, they are entitled.

It happens just outside the sight of celebrities and “normal” people. Unless you are autistic, or your family member is, you probably don’t spend much of your days reading and thinking about what it means. You take the sound bites, read an article or two, watch 60 Minutes or Larry King. Nothing wrong with that, it isn’t your job to figure all this out.

What most people know is that there are a lot of loud voices saying that autism must be eliminated. Most people know the name Autism Speaks. Do they know the consequences of the melodramatic hand-wringing pity or the misunderstanding and the sometimes outright hatred for human diversity spread by the organization? People are denied employment, homes, and basic human rights in a world where disability is equated with helplessness and tragedy. It doesn't have to be that way.

God have mercy on the man
Who doubts what he's sure of.
-Brilliant Disguise

I ask this of you: look at the numbers they use when they talk about us. Are there 1 in 150 people who "cannot communicate?" Are there 1 in 150 who are what some “advocates” call the “real autistics?” And if there are, does this mean that Autism Speaks should be allowed to make decisions affecting their futures? And if there are not, if I and others like me are included in the numbers they use, should we not be represented among the decision makers? Are we not being silenced, effectively, as the Squeaky Wheel turns on and on?

Lives on the line where dreams are found and lost
I'll be there on time and I'll pay the cost
For wanting things that can only be found
In the darkness on the edge of town
-Darkness on the Edge of Town

Please watch the video, “I Am Autism” one more time. Without the sound on this time. What do you see? I see people, not vacancy. Not empty shells. People who had no idea that their faces would be used to manufacture pity.

Dress him in a white shirt. Film him alone. This is what the call for videos asked.

What did they promise? To shine a bright light.

(Fade to darkness. Fade away.)

All lyrics quoted are by Bruce Springsteen.

What Kind of Troll Am I?

2009-09-25T20:47:00.012-04:00

If you are a reader of blogs about autism, you have seen your share of comments denouncing the views of self advocates around the web. Sometimes they are personal attacks on autistic people. Many rehash the same tired "Not Really Autistic" meme or promote urban myths about the causes of autism. Most feed pervasive stereotypes of one sort or another. Still others are so vile I won't describe them even obliquely.

Most readers of this blog tend to be civil and capable of using reason to make their points. However, if you are someone who enjoys being abusive toward autistic self advocates and those who support their goals, you just might be wondering…What kind of troll am I? Here is a survey so scientifically valid, it is sure to be linked from AoA ASAP.

What Kind of (Autism) Troll Am I?

1. My favorite tactics for engaging in an internet argument are:

a) Logic and reason.
b) Self pity and demands.
c) Cursing and YELLING.
d) Libel and Terroristic Threatening.

2. My definition of autism is:

a) A broad spectrum of conditions evidencing differences in communication, social behaviors and repetitive behaviors or intense restricted interests.
b) Limited by the characteristics I see in my own child.
c) A tragedy, a kidnapping soul stealer, a monster or a train wreck.
d) Mercury poisoning!

3. I often visit the blogs of writers I strongly disagree with because:

a) I believe it is important to learn about a variety of viewpoints.
b) Someone needs to help them see how wrong they are.
c) I do my best to make them look foolish.
d) These people are not entitled to speak. Only I know the truth about autism.

4. When I read a post I disagree with:

a) I go to my own blog and write about the issue.
b) I jump right in and correct the person’s mistake! For example, “I know you think you have been discriminated against, but as the parent of someone like you, only more so, I can assure you that you are wrong again!”
c) I know the person who wrote it is a liar. He/she is not even autistic!
d) I litter the comments section with swear words and insults. They deserve it!

5. My response to someone who asks for respect is:

a) I guess my input isn’t needed here.
b) What are they talking about? I said “person with” autism, didn’t I?
c) What about me??? When do I get respect???
d) You are an &*)#ing &%^#! and you mother is *&#@*!

6. My child is different from the bloggers on the Hub because:

a) The writers on the Hub are all adults.
b) My child is autistic! Not like these fakes!
c) I don't have children, I have a real disability.
d) My child has no abilities or skills whatsoever.

7. No matter how many times you tell me, I will never believe that:

a) People can be so rude.
b) You see autism as a disability.
c) Neurodiversity means recognizing a the full diversity of neurotypes as valid human presentations.
d) Autism Hub blogs are not financed by Big Pharma, the earth is round, and people have landed on the moon.

8. Which of these comments best exemplifies your writing style:

a) "I strongly disagree with your viewpoint!"
b) "I'm sorry if it hurts your feelings, but autism is not some silly little clique as you obviously think it is."
c) "People like you are depriving everyone else of the cure they deserve."
d) "Shut up, you dumb @*^#."

Scoring: Total your responses for each letter. Are they mostly in one category or another? If so, your identity has been revealed! See below for details. Otherwise, you may find that you are a combination of trolltypes or belong to a category not listed here. Either way, don't bother leaving an offensive or libelous comment here. It will be promptly deleted.

Bettroll: Bettroll doesn't mind calling a self advocate any disgusting name he can think of, and may even threaten the lives of those who are too vocal in their self advocacy. Believes autism is an injury that can be cured, but this takes around 75 years. Answers mostly (d).

Lurtroll: This one claims to be silent while speaking loudly and carrying a big chip on his shoulder. Uses phrases like "you people" liberally. Claims to know everything about his favorite bloggers from diagnostic labels to what brand of toilet paper they use. Demands ever more personal information while hiding behind pseudonym. This may be you if most of your answers were (c).

Nottroll: When disagreeing with something, this person is civil about it. His or her comments are rarely deleted or disapproved by blog owners. If you chose mostly (a) answers, you are probably not a troll.

Agritroll: This troll arrives with hoe in hand, ready to dig in the dirt. Some might think she is preparing the soil for new crops. Don’t believe it. Is that a shovel in the back of her pickup? She comes to bury self advocates in her generous piles of manure. If the (b) responses best describe your trolling, this one may be you.

Disclaimer: These trolls are semi-fictional. They are not generally recognized diagnostic categories (though some have been proposed for inclusion in DSM V).

Responding to "I Am Autism"

2009-09-23T10:01:00.015-04:00

A nice collection of links to posts about the "I Am Autism" Public Disservice Announcement can be found at I Speak of Dreams.

Therein lies the problem

2009-09-22T00:04:00.001-04:00

Top Shelf: A New Video

2009-09-18T15:37:00.002-04:00

Checklist of Neurotypical Privilege: New Draft

2009-08-07T21:35:00.010-04:00

Many changes suggested by commenters have been incorporated. Items on employment and education have been added. Some items have been combined to make room for other points that had been overlooked. The introduction has been expanded to clarify issues around the words "privilege" and "neurotypical." A link to an article on confronting privilege has been added. Headings have been included to facilitate easier reading.

This is intended as a semi-final draft, and is still open to modification as needed. Please discuss any concerns in the comments section. As with the other posts on this topic, attempts to derail the discussion are not welcome, and will be deleted.

A Checklist of Neurotypical Privilege

Since its publication in 1988, Peggy McIntosh’s essay, White Privilege: Unpacking the Invisible Knapsack, has come to be seen as a standard tool for examining the often unacknowledged advantages conferred on the white majority. The article has since been adapted to reflect the advantages of many other majority groups, spawning lists of straight, thin, cisgender, class, (temporarily) able-bodied and other forms of privilege. As far as I know, the advantages of being neurotypical (having a neurology that roughly corresponds to societal expectations) have not previously been listed in a systematic way, with the goal of encouraging a similar analysis.

This explains the genesis of this list, but not its reason for being. As autistic adults, we have often found ourselves excluded from organizations claiming to speak for us. We have been told that our thoughts and experiences are of no value in general discussions of autism. Autistic adults who dare to speak openly on topics related to autism are often treated with condescension, ridicule and disdain. Autistic children are restrained in isolation rooms, bullied not only by peers but by teachers, while some of us have been told this is not our concern. Autistic adults are tasered by police for their communication and movement differences. Every year, autistic children and adults are murdered for no reason other than their neurology. A life in which a person can be fairly sure these things will not happen to her/him is a privileged life. Having one’s views taken seriously on these subjects is another example of privilege.

Autistic people are not the only ones affected by neurotypical privilege. Neurodiversity is a broad concept, including the entire range of human experience. We recognize that people labeled with ADD, ADHD, Bipolar Disorder, Schizophrenia, and a multitude of other conditions considered disorders by society also experience marginalization. However, this list was constructed by autistic people and allies, and will surely fall short of addressing neurotypical privilege as it impacts other groups.

Additionally, the authors of this list acknowledge that the term “neurotypical” has been identified as problematic, since even persons who may not have a specified neurological difference may not see themselves as “typical,” and that there is technically no such thing as a “typical” brain. We understand—and celebrate—that every single individual is complex and unique. We have chosen “neurotypical” precisely because of its neutrality—it is neither positive nor negative. This is not the place to entertain long discussions about the perceived implications of the term. Those discussions only serve to derail conversations about truly vital issues, such as exclusion, abuse, torture, and murder.

In compiling this list, we have been acutely aware that the topic of privilege is one many people find hard to digest. For anyone who has not come across the concept before, or who feels that he or she does not fully understand what it means in this context, I highly recommend reading the original McIntosh article in its entirety before beginning the list of neurotypical privilege presented here. For those who find themselves feeling defensive upon reading, you are not alone. For most of us, this is a necessary part of the process of acknowledging and understanding privilege. Here are a few basic things to remember about privilege:

Privilege is not your fault. It is an artifact of systems that favor some people over others, systems that have evolved naturally to meet the needs of the majority, but have failed to provide adequate accommodations for those outside it. For more information on understanding and confronting privilege, please see this link.

Privilege is not, in itself, a terrible thing. Having any form of privilege does not make you a bad person. Just about everyone has some form of privilege. No, that doesn’t mean it all somehow “balances out.” A person can have, for example, white privilege, male privilege, class privilege, and heterosexual privilege, while still lacking neurotypical privilege. Likewise, not all autistic people have had the same experiences; other forms of privilege can act as a cushion against many of the harsher realities endured by those who belong to multiple disenfranchised groups.

The statement that privilege exists is not an accusation or attempt to blame. It is an invitation to see your experiences and the experiences of others in a new light. It is not an admonition to change the world, but a simple tool with which to begin considering if, possibly, some changes might be worth working toward.

Checklist of Neurotypical Privilege

Safety

1. I have never been told, because of my neurology, that I am incapable of feeling pain.

2. If I have a medical problem, I do not worry that my doctor will dismiss it as part of my neurotypicality.

3. When attempting to purchase health insurance, I know that I will not be rejected because I am NT.

4. If I am bullied or abused, people will not assume that my neurology means I am at least partially to blame, or that the abuse would stop if I tried harder to behave like someone else.

5. I can assume that police officers will not become alarmed at my natural body language and find it necessary to subdue me in advance of any wrongdoing.

6. I do not have to carry a special card or bracelet with me to explain my natural body movements or the sounds I naturally make.

7. I am not considered more dangerous and more likely to commit a crime because of my neurology.

8. People of my neurology are not generally considered burdensome to our families or to tax-payers.

9. Nobody will murder me because of my neurology.

10. If I am murdered, my murderer will not be let off because my murder was deemed “an act of mercy,” or given a light sentence because of the stress caused by interacting with me.

11. I do not have to fear that important decisions about my life will be made by others who are considered more qualified based on their neurology.

12. I am not expected to accept seclusion rooms, restraints, or neuro-enhancing drugs as conditions of my educational experience.

Inclusion

13. For a child of my neurotype, everyday teaching of the skills they will need to live in this society is called education or parenting—not therapy, treatment, or intervention.

14. If someone of my neurology can do something well, I will not be punished for being unable to do the same thing well or at all.

15. People do not constantly tell me that I need to work on the things which I am very bad at, at the expense of things which I am good at and enjoy doing.

16. People who have power over my education will probably not decide that, instead of receiving the academic education most of my peers receive, it would be best for me if my time in school were spent learning non-academic “skills.”

17. I can reveal my neurology to my boss and coworkers without fear of losing my job.

18. I can ask for technical or social support on the job without being seen as a troublemaker or charity case.

19. People do not automatically assume that the best place for me to live is an institution.

20. The majority of people who make the laws of my nation share my neurology.

21. The services that I need to survive not only already exist, but even if I use those services on a 24-hour basis, I will still be considered independent.

22. When I need help performing a particular task, I can ask for help without having to produce documentation to prove I actually need help with it. The help will most often be provided in a manner I can understand, and will not be considered an inconvenience or an act of pity.

23. No one sees my neurology as being in need of elimination or cure.

24. If I am visibly upset, people generally assume something must have upset me, and will generally try to help me.

25. People do not suggest that groups that are made for the benefit of people of my neurological type be led and ruled by people of a different neurological type, because mine is seen as inherently incapable.

26. I have never had to take a single test that determines, for my entire lifetime, whether I get to communicate.

Relationships

27. My family, friends, and significant others are not told that I am incapable of relating to other human beings.

28. If I am an adult, I can be a sexual being without the assumption that any partner attracted to me must be a predator or pedophile.

29. I am never told that I should not have children lest I pass on the genes that cause them to share my neurological type.

30. No one speculates about whether I am competent to raise children based solely on my neurology.

31. People do not assume that living in the same household as me is inherently “tragic” or “devastating,” or that my family, friends and partner will need a support group to deal with living with me.

32. I will not be asked to leave a public place, or to change where I live, because people are uncomfortable with my neurotypical behaviors.

33. If I am unhappy, people do not automatically assume my unhappiness is the result of me being who I am.

34. My opinions on social mores and societal issues are not dismissed based on my neurology or on the assumption that I am incapable of understanding how these things work. Likewise, my gender identity and sexual orientation are not discounted because of my neurology.

Respect

35. I expect people to presume intellect and competence with me.

36. If I fail, most will encourage me by telling me that I will ultimately succeed.

37. If I fail to understand autistic people, this is attributed to a deficit inherent in autistic people rather than in me.

38. If I have a particular talent or ability, I can demonstrate that talent without being called an “idiot savant” or my talent being called a “splinter skill” or some other demeaning word.

39. The definitions of rude and irritating conduct were developed by and for people with my neurology.

40. I am not praised for acting less neurotypical or punished for acting more neurotypical.

41. I am not expected to alter or suppress my natural ways of moving, interacting, or expressing emotion in most circumstances.

42. If I fail to alter or suppress my natural ways of moving, interacting, or expressing emotion, I do not fear public ridicule or exclusion because of this.

43. When prospective parents and others speak of wanting a “healthy child,” I know that they mean a child like me.

44. People don't accuse me of grandiosity or derisively dismiss it if I suggest that some admirable historical figure might have been neurotypical.

45. It is considered good for people who are not like me to try to act more like me.

46. My natural movements and traits are not used by my peers to ridicule others of their neurological type, either jokingly or maliciously.

47. I am never told that the fact I have a certain cognitive skill means that I am lying when I say I lack another cognitive skill. Nor am I dismissed as incapable of things I truly can do because I lack certain cognitive skills.

48. I can discuss my interests at length without this being viewed as a “symptom.”

49. When I communicate, people do not gather in crowds around me and gawk.

50. My behaviors, abilities, and skill levels at age 2 or 3 are considered indicative of an immature phase of life that will pass naturally, not as representative of my prognosis for the rest of life.

Definition of terms

Majority: The dominant group.

Minority: (1) A racial, religious, political, national, or other group thought to be different from the larger group of which it is part; (2) A group having little power or representation relative to other groups within a society; (3) a member of one of these groups.

Neurotypical: (1) Having a type of neurology that is expected and/or favored by the society in which one lives. (i.e., having a “normal” or “typical” brain, and the typical sensory processing/body movements/facial expressions associated with a typical neurological system.)

We: (1) The people who helped to create this document—most of us autistic or with other less typical neurology; (2) those who support the recognition of human rights for autistic people and others with less typical neurology.

Privilege: Edited Document

2009-07-31T20:20:00.005-04:00

Many thanks to all who have contributed to the working document on neurotypical privilege. Because I want this to be accessible to as many people as possible, I would like to make it available through autistics.org, ASAN's website, and any other site that would like to use it. While a few people have already weighed in to advocate for keeping the entire list (at this time 261 points long!), others have remarked that it becomes hard to read at a certain point. I believe that 50 items is about the maximum for ease of reading and comprehension. I have made an attempt at a first edit by choosing those items I believe best illustrate the core concept of NT privilege.

The document will be open here for review for a period of one week. Everyone who has contributed, or would like to contribute will have the opportunity to critique the list, and to make arguments for including other points. Those items which receive multiple votes or especially well reasoned arguments will be given extra consideration. The longer list will remain here, and will be linked from the sidebar for easy access.

Suggested questions for discussion:

Which points from the unedited list (not included in this one) are most important to you, and why?

Are there points on this list you would choose to remove in favor of others?

Would the list be equally effective with 60 points? More than that?

Does the document need a different title? Someone has suggested that "neurotypical" be replaced with "neuroconvergent." Personally, I am not fond of the term "neurotypical," as I think it lacks accuracy. However, it is a term many people have become familiar with, and I hesitate to introduce a less familiar term. I don't see "non-autistic" as a good choice in this case, either. Suggestions, anyone?

Note: While civil dissenting opinions are generally welcome at Asperger Square 8, I will not be allowing comments on this post that deny the validity of the overall concept of neurotypical privilege, or in any way attempt to derail the discussion. Thank you for understanding.

The Checklist of Neurotypical Privilege

Since its publication in 1988, Peggy McIntosh’s essay, White Privilege: Unpacking the Invisible Knapsack, has come to be seen as a standard tool for examining the often unacknowledged advantages conferred on the white majority. The article has since been adapted to reflect the advantages of many other majority groups, spawning lists of straight, thin, cisgender, class, (temporarily) able-bodied and other forms of privilege. As far as I know, the advantages of being neurotypical or neuroconvergent have not previously been listed in a systematic way, with the goal of encouraging a similar analysis.

In compiling this list, I have been acutely aware that the topic of privilege is one many people find hard to digest. For anyone who has not come across the concept before, or who feels that he or she does not fully understand what it means in this context, I highly recommend reading the original McIntosh article in its entirety before beginning the list of neurotypical privilege presented here. For those who find themselves feeling defensive upon reading, you are not alone. For most of us, this is a necessary part of the process of acknowledging and understanding privilege. Here are a few basic things to remember about privilege:

Privilege is not your fault. It is an artifact of systems that favor some people over others, systems that have evolved naturally to meet the needs of the majority, but have failed to provide adequate accommodations for those outside it.

Privilege is not, in itself, a terrible thing. Having any form of privilege does not make you a bad person. Just about everyone has some form of privilege. (No, that doesn’t mean it all somehow “balances out.”)

The statement that privilege exists is not an accusation or attempt to blame. It is an invitation to see your experiences and the experiences of others in a new light. It is not an admonition to change the world, but a simple tool with which to begin considering if, possibly, some changes might be worth working toward.

Checklist of Neurotypical Privilege

1. My family, friends, and significant others are not told that I am incapable of relating to other human beings.

2. I have never been told, because of my neurology, that I am incapable of feeling pain.

3. For a child of my neurotype, everyday teaching of the skills they will need to live in this society is called education or parenting—not therapy or treatment.

4. People do not constantly tell me that I need to work on the things which I am very bad at, at the expense of things which I am good at and enjoy doing.

5. I can reveal to my boss and coworkers that I am neurotypical (NT), without fear of losing my job.

6. If I am an adult, I can be a sexual being without the assumption that any partner attracted to me must be a predator or pedophile.

7. I am never told that I should not have children, lest I pass on the genes that cause them to be like me.

8. No one speculates about whether I am competent to raise children based solely on my neurology.

9. People do not assume that living in the same household as me is inherently “tragic” or “devastating,” or that my family, friends and partner will need a support group to deal with living with me.

10. If I have relationship problems or get divorced, people do not automatically assume that my neurology was the sole or main cause for these problems.

11. People of my neurology are not generally considered burdensome to our families.

12. People of my neurology are not generally considered burdensome to tax-payers.

13. Nobody will murder me because of my neurology.

14. If I am murdered, my murderer will not be let off because my murder was deemed “an act of mercy,” or given a light sentence because of the stress caused by interacting with me.

15. People do not automatically assume that the best place for me to live is an institution.

16. If I am bullied or abused, people will not assume that my neurology means I am at least partially to blame, or that the abuse would stop if I tried harder to behave like someone else.

17. If I have a medical problem, I do not worry that my doctor will dismiss it as part of my neurotypicality.

18. When attempting to purchase health insurance, I know that I will not be rejected because I am NT.

19. The majority of people who make the laws of my nation share my neurology.

20. I can assume that police officers will not become alarmed at my natural body language, and find it necessary to subdue me in advance of any wrongdoing.

21. I do not have to carry a special card or bracelet with me that explains my natural body movements or the sounds I naturally make.

22. The services that I need to survive not only already exist, but even if I use those services on a 24-hour basis, I will always be considered independent.

23. When I need help performing a particular task, I can ask for help without having to produce documentation to prove I actually need help with it. The help will most often be provided in a manner I can understand, and will not be considered an inconvenience or an act of pity.

24. If I fail to understand autistic people, this is attributed to a deficit inherent in autistic people, rather than in me.

25. If I have a particular talent or ability, I can demonstrate that talent without being called an “idiot savant” or my talent being called a “splinter skill” or some other demeaning word.

26. The definitions of rude and irritating conduct were developed by and for people with my neurology.

27. I am not praised for acting less neurotypical, or punished for acting more neurotypical.

28. I am not expected to alter or suppress my natural ways of moving, interacting or expressing emotion in most circumstances.

29. If I fail to alter or suppress my natural ways of moving, interacting or expressing emotion, I do not fear public ridicule or exclusion because of this.

30. I will not be asked to leave a space, or to change where I live, because people are uncomfortable with my neurotypical behaviors.

31. When prospective parents and others speak of wanting a “healthy child,” I know that they mean a child like me.

32. No one sees my neurology as being in need of prevention, treatment, or cure.

33. People don't accuse me of grandiosity or derisively dismiss it if I suggest that some admirable historical figure might have been neurotypical.

34. It is considered good for people who are not like me, to try to act more like me.

35. Even if I completely lack a conscience, I am automatically considered less dangerous than autistic people.

36. My natural movements and traits are not used by my peers to ridicule others of their neurological type, either jokingly or maliciously.

37. I can assume that most restaurants, theaters, stores and other places I would like to go will not be so loud or brightly lit or crowded that I will become unable to function at a basic level.

38. My behaviors, abilities, and skill levels at age 2 or 3 are considered indicative of an immature phase of life that will pass naturally, not as representative of my prognosis for the rest of life.

39. I am never told that the fact I have a certain cognitive skill means that I am lying when I say I lack another cognitive skill. Nor am I dismissed as incapable of things I truly can do, because I lack certain cognitive skills.

40. I can discuss my interests at length without being seen as strange or obsessive.

41. If I am visibly upset, people generally assume something must have upset me, and will generally try to help me.

42. If someone of my neurology commits a crime, people do not automatically assume I am more likely to commit a similar crime.

43. If someone of my neurology can do something well, I will not be punished for being unable to do the same thing well or at all.

44. If I am unhappy, people do not automatically assume my unhappiness is directly caused by my neurology.

45. People do not suggest that groups that are made for the benefit of people of my neurological type be lead and ruled by people of a different neurological type, because mine is inherently incapable.

46. I expect people to presume intellect and competence with me.

47. If I fail, most will encourage me by telling me that I will ultimately succeed.

48. I do not have to fear that important decisions about my life will be made by autistic or other non-neurotypical people, just because I am neurotypical.

49. I have never had to take a single test that determines, for my entire lifetime, whether I get to communicate.

50. When I communicate, people do not gather in crowds around me and gawk.

Definition of terms

Majority: The dominant group.

Minority: (1) A racial, religious, political, national, or other group thought to be different from the larger group of which it is part; (2) A group having little power or representation relative to other groups within a society; (3) a member of one of these groups.

Neurotypical: (1) Having a type of neurology that is expected and/or favored by the society in which one lives. (i.e., having a “normal” or “typical” brain, and the typical sensory processing/body movements/facial expressions associated with a typical neurological system.)

We: (1) The people who helped to create this document—most of us autistic or with other less typical neurology; (2) those who support the recognition of human rights for autistic people and others with less typical neurology.

This document was created by readers of Asperger Square 8. A more extensive list of neurotypical privilege can be found here.

The ever-expanding list of neurotypical privilege

2009-07-29T00:20:00.015-04:00

This is the complete list collected so far from comments to this post. I will continue to add to this as further privileges are submitted. This list will have a permanent link in the sidebar to make it easy to find. If I have left out your contribution, this was not intentional, and will be corrected if you let me know.

I am currently working on an edited version, which I believe will be more reader-friendly, and thus have the potential to reach more people. A draft will be available here soon, and everyone who wishes to participate will have the opportunity to influence which items appear on the final list.

Thanks again to all who have worked on this so far!

My teachers are not labeled bad teachers if they allow me to be myself.

My teachers ARE labeled bad teachers if they punish me for being myself.

People will not constantly tell me that I need to work on the things which I am very bad at, at the expense of things which I am good at and enjoy doing.

Schools, colleges and universities teach in ways that suit my neurology.

No school, college or university will refuse to admit me purely because of neurology.

People who have power over my education will probably not decide that I need to spend my formal education time learning non-academic skills in lieu of receiving the academic education which most of my peers receive.

Teaching a child of my neurotype the skills they will need in their life in this society is called education or parenting, not therapy or treatment.

When a child of my neurotype refuses to obey a direct command from a teacher, holding them down with four adults so forcefully that bad bruises are left, or worse, is not considered to be a completely appropriate and understandable response (even when the child fights back in response to the physical abuse). Neither is having the child arrested.
If I am assigned only management help positions with my school's sports team despite being an actual team member with a number, am allowed to play only in the last few minutes of the last game I am allowed to be a team member according to school policy, and I break school records, the news coverage will be of how worthless the coach was for keeping me benched for nearly four entire seasons rather than on how awesome he was for letting me play those few minutes.

I can reveal to my boss and coworkers that I am NT, without fear of losing my job.

People do not suddenly fire me, break up with me or refuse to be my friend when I disclose my neurology.

If I have sufficient skills, qualifications and experience to do a job and I am given said job, giving me said job is not seen as an act of charity.

If I'm under-qualified, but I'm still "the best of a bad bunch" amongst the candidates applying, people do not assume that I got the job because the employer felt sorry for me because of my neurology.

I don't have to worry that if I tell my boss I am NT they will find something wrong with my work and fire me.

If an NT asks for clarification from a boss, or to not work on the same schedule as a difficult co-worker, it's not seen as an accommodation that requires documentation, and the NT being too needy and difficult.

If my job doesn't work out, it is not automatically my fault.

If I am an adult, I can be a sexual being without the assumption that any partner attracted to me must be a predator or pedophile.

My partner can express attraction to or admiration for aspects of my behavior or personality which happen to be characteristic of my neurology without his being seen as attempting to take advantage of a weaker person.

If I have biological children, no one worries, or assumes that I or my partner worry, that they might inherit my neurology.

No one speculates about whether children raised by someone of my neurology is likely to become feral.

If I have relationship problems or get divorced, people do not automatically assume that my neurology was the sole o main cause for these problems.

I will not have been socialized out of my natural ways of being to the extent that when I see other NTs I will have no clue how to interact with them for fear that I won't be accepted or that I will alienate them by being too autistic.

I probably won't have to deal with feeling lonely due to being in some weird 'no-man's land' where I am either 'too NT' for the 'normals' or 'too normal' for the NTs.

I won't have to feel too afraid to even try to go to a social group for NTs as there is not much chance I will be rejected for not being NT enough or alienating the other members.

If I am in a relationship with another person of my neurological type, the reaction of society is not that no one else would date either of us.

In addition, being told I am 'encouraging' said other person of my neurological type is not an insult but a compliment.

If I am involved in a romantic relationship, it is not automatically assumed to be an act of pity on the part of the other person involved.

If I am asexual, I will not be used as evidence that all people with my neurotype are asexual.

I am never told that I should not have children, lest I pass on the genes that cause my neurology.

I am never told I cannot be a good parent simply because of my neurology.

The types of housing that is built for people of my neurological type come in all shapes and sizes, not just in forms that are big enough for just one person to live in per unit without a life partner, because they assume I will never have one anyway.

If I have an autistic child, many people will consider me to be above all criticism.

If I have an autistic child, I can call myself an autistic parent, even though I am not myself autistic. And people will know what I mean.

If I have an autistic child, or any child at all, I can be sure that most people assume I am neurotypical.

My parents are not labeled bad parents if they allow me to be myself.

My parents ARE labeled bad parents if they punish me for being myself.

No one makes up a poorly-defined pop-psychology "disorder" (such as CADD) designed to explain the negative effect we NTs have on our autistic-spectrum partners.

If an autistic person criticizes any parent of an autistic child, then I can usually get away with painting that person as hating parents or believing all parents of autistic children are bad parents.

People do not assume that my family, friends and partner will need a support group to deal with living with me.

If my parents or spouse abuse me, I will not be told that my neurology drove them to do it.

People of my neurology are not generally considered burdensome to our families.

People of my neurology are not generally considered burdensome to tax-payers.

Nobody will murder me because of my neurology.

If I am murdered, my murderer will not be let off because killing someone of my neurology is an act of mercy.

People do not assume that my neurology is a valid reason to force me to live in an institution.

Spending time around me is not seen as an act of heroism.

If I am bullied, people will not assume that my neurology means I am at least partially to blame, or that the bullying would stop if I tried harder to behave like someone non-NT.

If I have a medical problem, I do not worry that my doctor will dismiss it as part of my neurotypicality.

When seeking medical care, I am not expected to reveal that I am NT.

When attempting to purchase health insurance, I do not fear I will be rejected because I am NT.

If I am ever severely ill enough to wind up in the hospital, I will not have to deal with medical professionals telling each other within my earshot that I have the cognitive functioning of an infant.

If I am in the hospital, and nothing in my health problem affects the functioning of my voice, I will not encounter situations where people make dangerous decisions that I am powerless to refute, and then interpret my physical resistance as failure to understand the decision.

When medical professionals or any one else learn of some of my traits and needs related to my neurotype, they are not confused by them, nor amazed that they've never seen or heard someone with that collection of traits before.

The majority of people who make the laws of my nation share my neurology.

I can assume that police officers will not become alarmed at my natural body language, and find it necessary to subdue me in advance of any wrongdoing.

I do not have to carry a special card or bracelet with me that explains how my neurology presents itself, because it is otherwise unsafe for me to be out of my house alone because of how law enforcement or other institutions might treat me for showing my natural body movements or the sounds I naturally make.

The services that I need to survive not only already exist, but even if I use those services on a 24-hour basis, I will always be considered independent.

Services for people like me are not considered a "special" add-on to ordinary life that can be taken away at any time.

The skills and talents at which people of my neurology tend to have an advantage, around which the system of the society in which I live is founded, are presumed to be objectively more important than those more commonly found in people of other neurological types.

People might actually have the patience to help me with things I need help with instead of assuming that I will be incapable no matter how much I am taught. This help will also most often be provided in a manner that I can understand, and teaching me in a way I can understand is not seen as some type of 'accommodation' or done out of pity.

My deficits are not considered deficits at all. Instead, they are considered universal faults in human cognition (even if they are not universal). And a good deal of effort is undertaken by my entire society to compensate for those deficits.

If it happens that I am better at something, more empathic, more sensitive, more honest or authentic, it is not considered a defect.

If I fail to understand autistic people, this is attributed to a deficit inherent in autistic people, rather than in me.

If I have a particular talent or ability, I can be sure that my talent will not be called a "splinter skill" or some other demeaning word.

When, in order to get access to the things I need or want in life, I am required to read and understand instructions, fill out applications or other paperwork, visit offices, or navigate bureaucracies, websites, or customer service departments, all of these things will have been designed BY and FOR people whose neurological processing is similar to mine.

I am not asked to continually produce documentation or forced to fight an uphill battle in order to constantly prove that I actually need some help with certain things.

The definitions of rude and irritating conduct were developed by and for people with my neurology.

If I find someone or something irritating or otherwise making me uncomfortable, I can assume that others around me will support me.

I am not praised for acting less neurotypical, or punished for acting more neurotypical.

My success is not measured by the extent to which I act non-neurotypical.

I am not seen as selfish, lazy, or stupid for wanting to act in accordance with my neurology.

I will not be subjected to endless impromptu annoying 'social skills' lessons 'for my own good' just because I am assumed not to understand certain things because I am NT.
No one ever plopped me in a chair, held me down, grabbed my chin, and refused to let me go until I "Show them orange crayon". After all, my childhood, and the freedom and playtime that go with it, were considered important.

I am not expected to alter or suppress my natural ways of moving, interacting or expressing emotion in most circumstances.

If I fail to alter or suppress my natural ways of moving, interacting or expressing emotion, I do not fear public ridicule or exclusion because of this.

If I am suppressing my ordinary body language, and then revert to my ordinary body language under stress, I am not accused of either not trying hard enough, or pretending to be neurotypical.

Social orders built around my neurological type are presumed to be natural, fundamental to the human condition, and unable to be changed in any way.

When prospective parents and others speak of wanting a "healthy child," I know that they mean a child like me.

No one expects me to gratefully embrace them as an ally when they tell me that they support an organization that's dedicated to preventing more people like me from being born.

I will not be asked to leave a space, or to change where I live, because people are uncomfortable with my neurotypical behaviors.

No one sees my neurology as being in need of prevention, treatment, or cure.

It is very rare for people to say that people with my neurology are innately inferior to others, or that humans are hindering evolutionary progress by allowing people like me to be born.

I am not treated like it is terrible news to find out I am neurologically typical.

People do not say that they would rather die than have my neurology, or that I am heroic for not killing myself because of my neurology.

People do not describe the births of people with my neurology as innately tragic, or seek to prevent us being born.

My neurology is not classified as a mental disorder.

I do not have to go through a whole month of being forced to see stereotyped, pity-party images of people with my neurotype and various intolerant, bigoted attempts to make sure that future generations of people with my neurotype do not exist and that my neurotype is "something for the history books."

People don't accuse me of grandiosity or derisively dismiss it if I suggest that some admirable historical figure might have been neurotypical.

People don't accuse me of grandiosity or derisively dismiss it if I suggest that some fictional character whose creator hasn't explicitly declared him or her to be neurotypical strikes me as being neurotypical.

I will not be patronized because of my neurology.

It is considered good for people who are not like me, to try to act more like me.

I can talk about my life without being asked what I think may have caused me to be neurotypical.

I can be fairly sure that the mannerisms, vocal tone, and other such attributes typical of my neurology are not used as iconic symbols of stupidity in my culture.

I am no one's badge of honor, just because they live with me. I am not a trial sent by God, a punishment, a blessing in disguise, a saint, or a devil. I'm just here, like anybody else. My family takes this as a given.

Aspects of my personality and ways of functioning in the world are not labeled as "symptoms" of any kind of "disorder."

If I have troubles in my life, or problems doing certain things, people will not automatically blame my neurology, nor will they claim that the answer to these problems is to change my neurology instead of changing my circumstances or my society.

When I behave in ways that come naturally to me, I don't have to worry that anyone will think I'm "crazy," or otherwise deficient.
I do not have to live with my parents waving that bleeping thing in my face about my younger sibling possibly becoming my legal guardian because my neurotype is considered defective and his isn't.

I am never told that I'm a weirdo, geek, retard, or "not a functioning human being" simply for my quirky behaviors.

I can relieve my stress in ways which other people will not automatically characterize as disturbing.

If I am happy with the way my mind works, no one questions this or argues that most people with similar brains would prefer to be different.

Even if I completely lack a conscience, I am automatically considered less dangerous than autistic people.

I don't get praised for acting inauthentic. In fact, I may even be shamed for it, especially if I am someone important like a politician.

I might not get picked last for teams in every single gym class due to having coordination issues.

If I am picked on in school, the teachers are less likely to simply ignore it just because I'm 'the weird kid' and therefore the bullying can't possibly be the fault of the perpetrators.

No one has suggested that people of my neurology be subjected to beatings in order to change their behavior.

I have never had a bunch of people jump up and down on top of me attempting to elicit pain responses typical of their neurology.

I will never have people tell me that I am a mindless waste of space and then deliberately fail to make any attempt to save my life in an emergency.

My natural movements and traits are not used by non-neurotypicals to ridicule others of their neurological type, either jokingly or maliciously.

I do not have to tremble in fear every time a group of bigots decides to go on a witch hunt and say to random "weirdoes," "Do you have autism?" and then be subjected to teasing, bullying, and ridicule if I make the mistake of saying yes.

I do not face insults, various objects thrown at me, and orders to leave the general area if I disclose my neurology.

My behaviors, abilities, and skill levels at age 2 or 3 are considered indicative of an immature phase of life that will pass naturally, not as representative of my prognosis for the rest of life.

If my abilities, sills, knowledge, and maturity at age 30 exceed those of a neurotypical 2 year old, I am not assumed to be faking my neurology. Children and adults are assumed to be different.

If I am past the age of 18, treating me in a manner consistent with common treatment of a young child is considered degrading, not necessary.

My parents probably won't hide my clothes when they think they are 'age-inappropriate' for me (in my case, the comfy sweatshirts that were made IN ADULT SIZES and thus FOR ADULTS TO WEAR 'make [me]look too childish and [I] should grow up').

People do not use my neurology to claim I can never become an adult.

When I accomplish something important to me, people do not go "awwww" and titter in the same voice that they use on small children who do something considered cute but ultimately meaningless.

If I tell people that I am neurotypical, they will not automatically start to treat me as though I am a young child.

I have never been asked to prove that I am neurotypical.

NTs can lie and will be believed. ASDs can tell the truth and people will assume they're lying due to body language and lack of eye contact

If I commit any crime from harassment or abuse to murder of an autistic person, there is a good chance I will be considered a hero or martyr by a sizeable number of powerful people.

If I harm an autistic person in any of the above manners or more, my word will almost certainly be given more weight than theirs, if they are alive to give their word.

I am never told that the fact I have a certain cognitive skill means that I am lying when I say I lack another cognitive skill. Nor am I dismissed as incapable of things I truly can do, because I lack certain cognitive skills.

If I am able to learn something that is difficult for neurotypicals to learn, and learn it only with great effort, and then lose the ability the moment I have something else to concentrate on (or lose it gradually over time), I am not accused of "presenting as more neurotypical" or "seeking attention" or "trying to look neurotypical".

If I exhibit a skill or behavior that a good part (say, half) of the people of my neurology do not exhibit, I am not accused of being a liar and being non-neurotypical.

I can tell the truth without fearing that the other party will assume I'm lying due to my natural body language and degree of eye contact. (this is similar to what someone else said - some of the other ones probably are, too).

I can share my opinions publicly without fear of being accused of not really being neurotypical.

When I argue, I can be right sometimes, with anyone.

I am allowed to use the word “we” without being accused of trying to speak for all neurotypical people.

If my interests are considered typical and acceptable for someone of my age and gender, I can discuss them as much as I like without being seen as strange or obsessive.

People will not tell me that I can't be neurotypical unless an autistic person tells me I'm neurotypical.

People do not assume that all NTs have the same views on politics, religion and philosophy.

If I tell someone my neurotype, they will not automatically assume that I must be just like another person of my neurotype that they know.

If I am visibly upset, people generally assume something must have upset me, and will generally try to help me.

I am never or rarely asked to explain what it means or what it is like to be neurotypical.

People don't things to me like, "You don't really seem neurotypical," or "If you hadn't told me, I would never have guessed you were neurotypical," and expect me to take it as reassuring or complimentary.

If someone of my neurology commits a crime, people do not automatically assume I am more likely to commit a similar crime.

When people realize I am neurotypical, they do not ask me if I am like a particular character they have seen in a movie.

People don’t usually confuse me with another neurotypical person, or expect me to take responsibility for what the other person has said.

People do not assume that NTs all have the same taste in food, books, music, films, television shows and similar.

If an non-NT *does* say that non-NTs (or certain types of non-NTs) are better than NTs, I do not have to explain millions of times that I do not agree with this person. Nor do I have to repeatedly tell everyone that accepting my life as valuable does NOT mean assuming others are inferior.

If someone of my neurology can do something well, I will not be punished for being unable to do the same thing well or at all.

If I exhibit a skill or behavior that a good part (say, half) of the people of my neurology do not exhibit, I am not accused of being a liar and being non-neurotypical.

If a certain amount of other people of my neurology exhibit a certain trait, no one feels compelled to claim that we must all exhibit this trait, or not really be neurotypical.

If I am not religious, people do not assume this is because I am angry with God for giving me my type of brain.

People are not pre-inclined to view anything I say in certain ways because I am neurotypical.

If I am unhappy, people do not automatically assume my unhappiness is directly caused by my neurology.

If I write an autobiography, it will be labeled a book about me as an individual and/or a book about specific things I have done (acting, mountain-climbing, sport, science, music, whatever)rather than a book about neurotypicality.

My uniqueness is often treasured by my family and friends.

If I do something that might be construed as selfish and self-centered, my actions will not be used as proof that all people of my neurology are selfish and self-centered. The same can be said for any other negative trait which I may on occasion display, or be misinterpreted as having.

It is not seen as my job to explain to anyone that asks, what it is like being neurotypical, simply by virtue of my neurotypicalness.

If I do something nice, it will not be used as evidence that all people with my neurology are incapable of lying, bullying, or meanness.

I am never told that my neurology means that I will never amount to anything in life.

In films or TV shows, NT characters are portrayed by actual NT actors.

If I have a religion, non-religious people are unlikely to assume that I was manipulated into my beliefs because my neurology makes me unable to think to myself. Nor will they assume that my faith is a crutch to help me survive the burden of my own neurology.

Nobody ever accuses me of not really writing the things I write, just because of my neurology.

When I make a drawing, a story or a sculpture, or anything remotely like that, people will either like it or dislike it, but no one will say that I am not really creative, nor would they praise my work out of pity or because they think of me as a small child or some sort of animal.

I am never told that my skills are impossible because a textbook says that people of my neurology are not good at that.

My family, friends, and significant others are not told that I am incapable of relating to other human beings.

People do not suggest that groups that are made for the benefit of people of my neurological type be led and ruled by people of a different neurological type, because mine is inherently incapable.

If my sexual orientation, gender identity, lifestyle preferences or beliefs are deemed nonstandard, others will not suggest that I am pretending, incorrect, jumping the gun or unable to really know such things about myself because I am neurotypical. They will not use my neurotypical status as a basis for defending intolerant remarks or beliefs about any of these identities.

Success is modeled after the viewpoints and lives of people of my neurology.

When I am with a friend or my partner that is not neurotypical, people will not address them instead of me when they want to know something about me, or speak to them after I ask them a question, etc.

I expect people to presume intellect and competence with me.

People do not suggest that groups that are made for the benefit of people of my neurological type be lead and ruled by people of a different neurological type, because mine is inherently incapable.

When I am with a friend or my partner that is not neurotypical, people will not address them instead of me when they want to know something about me, or speak to them after I ask them a question, etc.

If I fail, most will encourage me by telling me that I will ultimately succeed.

Nobody ever claims that I am too low-functioning to understand my own point of view, and that I am merely the puppet of people of another neurology who wish to use me for their own benefit.

If I achieve some sort of success (academically, professionally, socially, or otherwise), I will not be patronizingly turned into an "inspiration" for other people.

I am not assumed to be less capable of living on my own simply because I am neurotypical.

My neurology will never be used to claim that I am more like an object than a human being.

I have grown up learning about techniques and devices that can help me with my most common difficulties. If I don't know I can ask someone and get a respectful or maybe even useful response.
Nobody says that my neurology makes me analogous to a robot, a vegetable or a non-human animal.

I have never been told, because of my neurology, that I am incapable of feeling pain.

I will never have people point to me, in my presence, and explain to each other that I am incapable of the skills that make a person human.

I am not portrayed as otherworldly, mysterious, psychic, demonic, monstrous, or angelic simply because of my neurology.

I do not have to fear that important decisions about my life will be made by autistic or other non-neurotypical people, just because I am neurotypical.

No one tells me that an autistic person with a neurotypical child, or an autistic person with a degree in psychology, knows better than I do what I need, want, or feel, or what it's like to be me.

I can pursue a particular interest or hobby to my heart's content without being told that I am engaging in an unhealthy "fixation."

I have never had to use physical violence as my only means possible to communicate basic information.

When I learn my native language, I automatically learn the meaning of the words before I learn how to say them, and never have to explain to anyone about what it's like to have learned them in the reverse order, or to have learned them much later than usual.

When I communicate, people do not gather in crowds around me and gawk.

When I communicate, people do not ask me to prove that I am the person communicating, nor do they subject me to an impromptu Turing Test to make sure that I am not communicating through some sort of computerized trickery.

I have never had to take a single test that determines, for my entire lifetime, whether I get to communicate.

I have never had delayed processing interfere with people's perception of me as a person who can comprehend, communicate, and interact with people.

Most people in my culture can understand my communication. (I know there are exceptions to this, Deaf people for example, but I couldn't figure out how to concisely cover all exceptions. Suggestions?)

My natural movements and traits are not used by non-neurotypicals to ridicule others of their neurological type, either jokingly or maliciously.

My neurotypicality is never used as a joke.

People will never think that respect towards me entails knocking on my door 3 times before they barge in anyway, whether or not I told them it was ok to come in.

If I am gifted at something, nobody, not even professionals, ever calls me an 'idiot-savant'.

Nobody ever calls me grandiose if I suggest that my neurology gives me specific skills that are important to me.

If I pass a first-order false-belief test, then people assume automatically that I have a theory of mind, and do not subject me to further testing of stuff totally unrelated to theory of mind in order to trip me up and accuse me of not having theory of mind.

When I argue, I can be right sometimes, with anyone.

If I identify as female, I will not be told that I am less female because of my neurotype.

When asked to participate in the board or an advisory panel of a company or foundation or something like that, I am not the only person there that is neurotypical, nor do they ignore me and only want me there to look good to the public.

I am never accused of being low-functioning or high-functioning by people who have power over my life, nor am I asked to divide people like me into the low-functioning ones and the high-functioning ones.

If I am having a bad day or even a bad and stressful period where I am under a lot of strain, people will not say I am 'regressing' and panic, fret or automatically tell me I need medication or intensive treatment.

I can assume that most restaurants, theaters, stores and other places I would like to go will not be so loud or brightly lit or crowded that I will become unable to function at a basic level.

I can easily find other NT people in movies or on television shows that are not explicitly about being neurotypical.

If I make even a half-assed attempt to look like I advocate for autistic people, I will be considered a hero, and I will not be considered to be acting out of self-interest. Autistic people will be afraid to call me out on my obvious abuses of nonautistic privilege because "beggars can't be choosers" when it comes to allies.

As a NT, I do not have obnoxious assholes deciding that they know best the amount of pain appropriate for someone in my situation.
I am not told that maybe if I didn't act so NT, then maybe I wouldn't have to feel ashamed of revealing that I'm NT.
The types of housing that is built for people of my neurological type come in all shapes and sizes, not just in forms that are big enough for just one person to live in per unit without a life partner, because they assume I will not have one anyway.

My opinions on social mores and societal issues will never be dismissed based on my neurology or on the assumption that I am simply "not understanding how these things work". Even when others of differing neurology agree with me

Nobody tries to one-up me by implying that their family member is more NT than I am and I must thus be incapable of understanding any of said family member's situation.

When I (erroneously) assume that the person I am speaking to shares some aspect of my mental experience, or way of perceiving the environment, this is not called "lack of theory of mind."

The private body language I naturally exhibit when I am angry, afraid, or frustrated is not likely to be viewed by other people as disturbing, or as evidence of a mental illness.

If I have difficulty understanding the behavior and perception of a person with a different neurology, I can feel safe in assuring myself that this is a fault inherent to either them, or their neurology, rather than my own lack of understanding. If a person with a different neurology has difficulty understanding my behavior or perception, I can take this as evidence of their (intrinsic) lack of understanding or insight.
If am an ally to autistic people, I can quit anytime. After all, I've done my part, and have other things to do with my life.
When I talk about parenting and family issues, people do not automatically assume I am not a parent. Nor do they tell me what a huge burden I must have been to my parents and how ungrateful I am for not appreciating that.
If I show people a document indicating hatred and fear towards people like me, I will not be greeted with disbelief that such things could happen.But since I am neurotypical, no such document would need to exist.
It's not illegal, anywhere, for me to have sexual relations based on my neurology.
I have never been told that my mannerisms must be constant and identical across a wide variety of situations in order to be taken seriously as someone of my neurology.
I have never had doctors randomly ask me to help them educate other doctors about people of my neurology.
If I am interviewed by reporters about my ethical or political views, I can be pretty sure that topic of the story will not be changed behind my back into how amazing or inspiring it is that someone of my neurology can do anything productive at all.
If I choose to, I can blend in relatively easily with a crowd of people of my general background.
I am usually able to describe and recognize the basic emotions, because while I was growing up, and people told me I was 'happy', 'sad', or 'angry', they actually got it right because my emotions were recognizable to others.
I am usually able to describe physical pain, because I did not spend my childhood being told something 'hurt' when I did not feel pain, and that it 'did not hurt' when I did feel pain.
People do not assume that knowing me or having me as a partner or child gives them total right to speak in my stead and to be accepted and embraced in all communities for NTs everywhere.
When I communicate my thoughts and opinions through writing, I will not have to worry about people trying to debunk me as a fraud and claiming that someone close to me is doing all the writing for me, that I do not really type on my own, and/or that anyone can clearly tell just by looking at me that I could never have such complex thoughts and understandings of the world.
If I lose skills as I grow older, such as finding it more difficult to learn new languages after childhood, this is considered a normal thing and is not labeled "regression."-People will not look on me with suspicion and question my credibility as a real NT if they find out that I was able to pick up bits of languages (or similar things) more easily in childhood, if I cannot readily do so as an adult.
If someone close to me dies and I don't immediately respond by grieving in a way that other people can recognize as grief, people will assume that I am just in shock or needing time to process my grief, rather than declaring that this is proof I have no empathy and don't regard humans any differently from inanimate objects.-People will not insist that I engage in actions and gestures that trigger distressing fight-or-flight reactions in me as part of "routine social politeness."
Once I am no longer an infant, I can safely assume that my parents will not talk to other people about my poop in great detail on the Internet.
If someone posts a video of me online in which I do anything other than scream and bang my head nonstop, people will not comment to it saying that this is proof that I am not a real neurotypical, and that they won't believe I am a real neurotypical until they see a video of me doing nothing but that.
Even if people beat me, lock me up or kill me, at least they acknowledge that they are doing all these things to me and not "to the neurotypicality," as if it were something alien possessing my body.
If I need mental health care (eg for depression etc) i will not be turned down for treatments that would be given to others with the same needs on the basis of my neurology.
Counsellors who make most of their money telling people others how damaging people of my neurology are to their partners would not be recommended to me.
Occupational health departments would not be reluctant to give me a job i have been offered based on misinformation that my neurology is a personality disorder!
I will not have to listen to peoples disbelief that someone of my gender can have my neurology
I will find it easy to meet others of my gender and sexuality who share my neurology.
If I am upset about something, no one writes it off as being a tantrum caused by my neurology rather than being wronged.If i move in politically progressive or anti-oppression activist circles, i am unlikely to meet people generally regarded as good anti-oppression activists who then turn out to work in jobs which directly oppress people like me because they think those jobs are "socially responsible" or "doing good for the community".
I have a reasonable expectation of both getting an interview and of passing an interview for jobs that i have the skills and qualifications necessary to do, and my natural body language during that interview will not be taken to indicate incompetence, dishonesty or deliberate disrespect to the interviewer.
If i do manage to get a job, i can be confident that i will not be required to wear clothes that are intolerable for someone with my sensory neurology to wear.
If I make a mistake and blame it on my "autism" colleagues show acceptance and understanding and nobody tries to cure me.
I can be present in public places frequented by many people (for example parks, city squares, shopping centres) without worrying that my facial expression or gaze will invoke hostility or violence from passers-by.
I did not spend my entire childhood being accused of lying or exaggerating when i honestly described my sensory perceptions of things and how they were affecting me.- I can easily get the attention of workers in shops, bars, restaurants, etc to get served with what i want, and am never or very rarely ignored or refused service because of my direction of gaze or facial expression.
If a sensory stimulus (eg. noise, lighting, temperature) is bothering me, i can reasonably assume that most or all the other people in the room are at least as bothered by it as i am, and that it will not be considered excessive to do something about it, or unreasonable for me to say i cannot tolerate it.
I can assume that not only will other people agree with me when I say a certain thing is intolerable, but that they will not try to put me through "exposure therapy" by refusing to allow me to cover my ears at certain noises, force me to listen to them over and over or at certain volumes, forbid me to leave a room when something in it is intolerable, etc, and believe that this will cure me of my "unreasonable sensitivity."
I will never be forced to re-interpret all of my life experiences through a medicalized lens of neurotypicality.
If, for some reason, I fail to maintain eye contact while chatting with someone, I won't be criticised for being deficient in social skills knowledge.
Because of my neurology, I do not need to drink alcohol or take any kind of drug or herbal remedy to lessen the effects of sensory overload, since I don't have this problem in the first place.
I am never called a savant by a teacher simply for having pronounced skills in math.
I am never told that I have no right to complain about the injustice done to many of my neurotype because "there are some NT people who have it worse than you do.
If I talk about caring for my own autistic siblings, I am fortunate enough that most people are such dumbasses about autism that they assume that I am a saintly NT caretaker sibling who can do no wrong, regardless of my actual neurotype.
I am not treated as a young child after disclosing my neurology, nor am I considered to be incapable of speaking for myself.
The idea that people of my neurotype are not damaged for being who they are and are deserving of basic justice and respect is not considered "enlightening." Just about everyone knows it.
I am not told to disclose my neurology to my classmates and talk about how spending money on puzzle-piece junk will "really help you.
My deficits in school are not blamed on my neurology.
If I have never been kissed, it is never assumed that no one wants to...
If I make the choice to stay abstinent until marriage, I am not given a patronizing smile and told that that's good because I couldn't handle it anyway.
If I tell people that I am NT, people don't blame it on my parents' lifestyle choices (such as smoking) or age.
When I talk about parenting and family issues, people do not automatically assume I am not a parent. Nor do they tell me what a huge burden I must have been to my parents and how ungrateful I am for not appreciating that.
When people tell me that anyone can be president, they actually mean me.
Alert alarms are designed so that they do not make me collapse in pain.
When I explain that a fire alarm loud enough to make me collapse in pain and render me unable to move is unsafe, I am not patronizingly told that this is only because I am "one of those people."
Nobody assumes that my cognitive abilities (or disabilities) are the way they are because of some emotional disturbance or trauma.
People never tell me that some of my cognitive traits just don't exist and have been invented by psychiatrists in order to sell more drugs.
Nobody has the right to deny my right to education because I refuse to take a neuro-enhancing drug.
If I identify as glbt in some way, I will not be the only person of my neurotype in support groups or forums.
I will never be told my sexuality is impossible, because people of my neurotype do not have sexualities.
If I were neurotypical, I would not get a lecture about the dangers of "recessive genes" from a nutty relative, as the result of revealing that my spouse has the same neurotype as my own neurotype.
If I were neurotypical, I would not have to wait till half of my life is over before finding out that there really are other people like us in the world, and that there is a name for our type, and that there are lots and lots of us all around the world, and then feel so shocked that it takes a year or two to get my head around the whole idea, and then feel completely p@##$% off that the name for our type is a clinical diagnosis.
The communication systems in use by the society I live in are designed to be easily learnable and understandable by a person of my neurotype.
I can expect that none of my parents, doctors, teachers, etc would ever believe that there is a "real me" locked somewhere inside of me waiting to be separated from my neurotypicality.
If I behave in a way that is more like how they want me to behave, they will not decide that this is "finally the real me" who they've never seen before, and that the entire rest of my life, I've somehow not really been myself.
My parents will not tell people that the real me was stolen and replaced with an empty shell, a monster, or a changeling.
My parents will not tell people that they love the real me but hate my neurology.-I will not have to watch celebrities, including ones I may have previously admired, turn out en masse to support events or charities whose goal is to prevent people like me from being born. (Well, this applies to disability in general and not just autism in specific.)
The people like me who are mentioned in newspaper and magazine articles, scientific journals, etc, are not all children.
When I read articles about people like myself, I do not have to deal with a majority of the references to people like me being to "neurotypical children" or "children with neurotypicality," as if adults like me didn't exist.
I can stare at things which interest me for hours on end, such as television programs or pictures in an art gallery, and people will not decide that this is proof that I am an empty shell.
I am assumed to be able to make my own choices about religion and spirituality, and not assumed to be either a special being who is innately more in touch with a higher power or to be incapable of really understanding religion and spirituality.
If my primary gender identity is female, liking and doing things that are regarded as feminine in this society will not be seen as incompatible with my neurology. People will not try to prove that my interest in these things is actually underlain by cognitive patterns they regard as inherently masculine, and that therefore I am not really as feminine, or as female, as other women.
I can bring up my neurology in any discussion, anywhere, without being told that I am not really NT, just doing this to be trendy, or looking for an excuse to be rude or a cop-out excuse for my failures.
I will never be told I cannot really be neurotypical because I do not resemble a certain fictional character in a certain movie.
When I am growing up, I meet enough adults with my neurology that I do not end up assuming that my neurology will either kill me or vanish by adulthood.
I don't have "staff" living in my "home" who try to make me act more like them in my free time.

Neurotypical Privilege: A working document

2009-07-26T10:55:00.006-04:00

Based on the important and excellent essay, White Privilege: Unpacking the Invisible Knapsack by Peggy McIntosh, as well as other, similar lists that have followed, this is the beginning of a version to address the privilege that comes with having no known neurological disorder or disability.

I would like to ask readers who are autistic or otherwise non-neurotypical to add to this list, and to offer criticism of anything I've listed that is not appropriate. If you are NT, you are also welcome to contribute observations about your own privilege. Civil debate on whether or not "neurotypical" is a useful or appropriate term is welcome, but will be stopped and moved to another post if this begins to be the primary focus. Also, if anyone knows of a list like this that has already been published, please let me know.

The Checklist of Neurotypical Privilege

I have never been asked to prove that I am neurotypical.
I am allowed to use the word “we” without being accused of trying to speak for all neurotypical people.
I can share my opinions publicly without fear of being accused of not really being neurotypical.
I can assume that police officers will not become alarmed at my natural body language, and find it necessary to subdue me in advance of any wrongdoing.
I can reveal to my boss and coworkers that I am NT, without fear of losing my job.
I can assume that most restaurants, theaters, stores and other places I would like to go will not be so loud or brightly lit or crowded that I will become unable to function at a basic level.
I can easily find other NT people in movies or on television shows that are not explicitly about being neurotypical.
When people realize I am neurotypical, they do not ask me if I am like a particular character they have seen in a movie.
I do not have to fear that important decisions about my life will be made by autistic or other non-neurotypical people, just because I am neurotypical.
I am not expected to alter or suppress my natural ways of moving, interacting or expressing emotion in most circumstances.
If I fail to alter or suppress my natural ways of moving, interacting or expressing emotion, I do not fear public ridicule or exclusion because of this.
When seeking medical care, I am not expected to reveal that I am NT.
When attempting to purchase health insurance, I do not fear I will be rejected because I am NT.
The majority of people who make the laws of my nation share my neurology.
I am never or rarely asked to explain what it means or what it is like to be neurotypical.
I can talk about my life without being asked what I think may have caused me to be neurotypical.
If I have a medical problem, I do not worry that my doctor will dismiss it as part of my neurotypicality.
If I am happy with the way my mind works, no one questions this or argues that most people with similar brains would prefer to be different.
People don’t usually confuse me with another neurotypical person, or expect me to take responsibility for what the other person has said.
I am not assumed to be incapable of empathy or compassion.

I repeat myself

2009-07-23T10:06:00.021-04:00

Had you said your life was difficult, frustrating, misunderstood, no problem. You said a “nightmare,” though, because of the autistic child in your life. If you had said that you’ve had to work very hard to get any doctor to treat your child’s medical problems, that they wrote off everything from seizures to acne as “part of the package” of autism, I would have nodded my head, understanding. But you said it’s “worse than cancer,” bringing into the argument the specter of death, and at the same time showing your disregard, your disdain, for the many self-advocates (and others) who have explained so often the multiple levels on which this offends. You said that your child’s life was a “tragedy” when you could have said “challenge.”

When I protested the use of these terms, you showed me your “rights.” Don’t you have the right to your opinion? Why don’t I just mind my own business? Why don’t I recognize that I am the one who oppresses you, trying to control your language and thoughts? You showed me your "honesty," how the rawness of your words might heal you and others who had not yet stated their own analogies— autism = [worst thing you can think of]—or submitted their own children's most personal struggles for public scrutiny.

Do you think that eventually I will get tired of making the same explanations, reminding you of history, privilege, and consequences? You are right. I am tired of it now, the same story over and over. But I remember Katie McCarron. Her mother saw her daughter’s autism as a tragic, too. I remember the times I nearly chose death over a world where I was sure my voice would never be heard and understood. So I say it again. I say it again. You want to know why I repeat myself? I’ve heard echolalia comes with the package. But there may be something beyond that...

I’ve been told that if I would just ask politely for what I need, people would find it easier to listen. Let me try that. Let me try that again. If you could possibly find a way to express your feelings, to ask for what you need, for what you want for your child, without doing things that make the world a harsher, less welcoming place for autistic people (including your child), that is something that would really be appreciated. And if what I’ve written doesn’t apply to you, I am sorry you had to hear this again. Thank you for listening.

Are you autistic?

2009-07-20T21:42:00.005-04:00

These designs have been added to the Asperger Square 8 cafepress shop.

Doodles

2009-07-19T09:52:00.004-04:00

I have one friend who likes to say “no” when we are out with Squawkers and someone asks the usual question. Is he real? She grows anxious, seeing someone step out of the way of his not really powerful beak, or hesitate starting up the car for fear of startling him. Another friend once mispronounced the word Karaoke, and is now afraid to say it. Today, we are seeing off two other friends on a road trip to the Northwest in a Flying Green Pea. Doodles serves shrimp and grits and beignets and French press coffee, but that isn’t what I have ordered. The place fills up fast with people and noise, and when I have finished my huevos rancheros and fruit cup, I’m ready to go.

This building used to be a filling station. The hand dryer in the restroom (you have to go outside to get there) blows harder air than expected, and I spend a few seconds letting it whistle through my fingers. The tune it plays is Refrigerator Door. Two of the people with me will know at least some of the words. Staying put is a talent we share. Then I am back at the table, and her father comes in and we haven’t spoken, not once, since the thing I did (bad) years ago. Hadn’t I just mentioned…no. Something else. Something else like it. Remember.

Sometimes, driving in hard rain, the old lines show through clearer than the new. I turn off the radio, slow way down, and promise myself I’ll replace the windshield wipers soon. Once I drove with windows so fogged, I could see nothing. I should not have had a license, I always thought that, but my father was insistent. He taught me how to watch for other people, always on the verge of making a terrible mistake. He taught me how to fill the car with gas, at the Shell on Harrodsburg Road. For several years, I bought all my gas there. Returning to the south side of town from wherever I noticed the tank was low, I knew it was not that different from the others, but I needed to be sure.

I never gassed up here. I think it was a Marathon. The Shell on Harrodsburg Road was safe like the second table by the window at Wendy’s and the back row left end seat at the movies, where I had to arrive 45 minutes early to be sure of not being displaced. I depend less on such assurances now. I go where I want to go, almost forgetting the many times I made it as far as the door of a business before returning home. Melodies and pictures still assemble themselves from whatever sounds and lines are available, but I am not afraid. No more or less than an unexpected squawk, these are a part of me, a way of making order. The harsh judgments of self and others, these are the lines that no longer apply. This is what I’m thinking as I stand in the parking lot at Doodles, and people begin to approach me with the question.

One of them has made a bet with her companion. He is still inside, eating. This time, my friend doesn’t say it. Someone else says something different. I see that the script will be improvised, the words on the screen in front of me are shifting. The woman points at Squawkers as he watches through the window, and shakes her head back and forth gleefully. She’s wins.

Across the parking lot are two identical cars, side by side. The license plate numbers reveal no discernible relationship. I notice the hubcaps are different. Relax a little. Overnight, magically, one time a cookie with a jack-o-lantern face turned into a cookie with a ghost. My younger brother pointed out the obvious: there must have been two. That was how I knew. I was going to be okay.

A bright red helmet

2009-07-18T00:39:00.006-04:00

For 21 years, he worked at the same job, at a golf club in Manchester, England. For the last eight years of his employment there, he was made to wear a bright red helmet, lest golfers confuse him with some other, regular, you know, non-autistic green keeper. Eight years he endured this and other forms of workplace bullying that included physical assault, ridicule, and being denied adequate breaks from heavy physical labor. Finally, in 2007, he began missing work and was fired by the club.

Now Andrew Beck, 44, has been awarded £78,000 in damages. Mr. Beck’s father, Arnold Beck, said that his son’s employers “never made an effort to find out anything about autism disorders. If they had done that he would probably still be working there…Hopefully it will make employers think twice about how they treat people.”

How do things like this happen? While Arnold Beck points out that golf clubs can be “notoriously stuffy and old-fashioned,” Renee at Womanist Musings calls the situation a study in ableism, acknowledging also the complicity of coworkers who knew about the abuse, but remained silent.

Over time, unchallenged abuse becomes the norm. The autistic employee, often someone who has faced bullying and exclusion for many years, may not be certain of his rights. He may not have a friend in the workplace to help him figure it out. He may have been advised not to rock the boat, when so few on the spectrum are fully employed. Bullying happens when some members of a society are viewed in some contexts as less than full citizens. With each press release declaring that autistic people are “sick,” or “damaged,” or “costly,” exclusion grows. With each self-advocate threatened or harassed, abuse becomes somewhat less unthinkable, slightly more ordinary.

I am happy that Andrew Beck has received compensation, some measure of justice for what he endured. Here’s hoping his next employer is more deserving of the loyalty and perseverance he showed on the last job.

Meanwhile, Nick Marner, the head green keeper responsible for the abuse, is still employed by the Davyhulme Park Golf Club.

Special guest visitor: T-Rex

2009-07-12T10:08:00.008-04:00

Ryan North is the dude who makes Dinosaur Comics. He is very cool about allowing others to use his images. Thanks, Ryan North! Anyone who is not already a fan of Dinosaur Comics should probably check it out at this link!

Edit: Sarah has a new post on the topic of privilege here. Among the many good links in her article is an explanation of the mouseover text in this comic!

Silent Neighbors

2009-07-11T10:09:00.010-04:00

Neighbors, the new video from Autism Speaks, calls for an end to "autism insurance discrimination." Exactly what this might mean is unclear. Certainly there is discrimination to be addressed. I have heard stories of people denied basic medical coverage because of an ASD diagnosis. The video states that "all children who need medical care deserve the same coverage. The same applies to adults. No one should be denied care because of a disability. The nature of the "medical care" implied here is another matter. While I agree that all medical conditions should be covered for all, the implication that autism itself is a medical condition for which there are standard "treatments" is troublesome.

More discussion of the video can be found here and here.

I found watching Neighbors with the sound turned off a more interesting and valuable experience.

In the first scene, two boys, both autistic, sit on the grass in their respective yards while a group of children plays.

Jason plays with a handheld video game.

Jack also seems to be playing a game.

One of the group approaches Jason and asks him to play.

Jason plays with the other children.

But no one has invited Jack.

He turns his head to watch the other children playing. Is he indicating he would like to play? He is at the very least showing interest in what the group is doing.

He expresses frustration, clenching his fists.

The story I see reveals the importance of inclusion. Each of the boys seems to choose a solitary game over the group activity. One is invited, encouraged to join in. The other is not, and becomes unhappy. It is a very simple, and very important story. Like many autistic people, Jack and Jason are willing to interact with others, but may have trouble initiating. In Jack’s position, I would not be able to tell whether or not I was welcome to join the others. I might not even be sure the others could see me. Personally, I would prefer to remain on the lawn with my video game, but knowing that you are welcome is important. Growing up “invisible” is confusing and damaging.

Of course, the story Autism Speaks is promoting is a different one. Due to his family's insurance coverage, Jason has had the therapies he needed. Jack has not. Yet left to their own devices, each sits alone. Their actions are identical, until one is noticed and included. There is no evidence whatsoever that Jack would not also respond to being invited into the group. But if he does prefer to be alone, as I did at his age, as I often still do, must this be seen as a tragedy?

Do the other, presumably non-autistic, children sense that Jason will be a better playmate than Jack? Have they heard their parents saying that Jason is “recovered” from autism? That Jack has been given a “death sentence?” Nah…most likely, they are just looking for one kid, any one kid, to even out the teams.

Perspective taking

2009-07-10T14:00:00.009-04:00

Here is an article in which a father pretends to take the perspective of a six year old boy diagnosed (er…I mean…afflicted) with PDD-NOS. Like a puppet, the child is used to express the worries and wishes of the true speaker.

Reading it, I reminisced about a few of the thoughts inaccurately attributed to me over the years by seemingly well meaning parents, teachers, psychologists and other persons in positions of power. Remembered how they all got it wrong. The conclusions they drew. She’s shy, she’s rebellious, she doesn’t like people, she’s selfish, she’s crazy, she’s “warped.” Yeah, warped.

At least they didn’t write it down and sign my name to it.

Being told what I thought, the reasons I did the “odd” things I did, having words put in my mouth constantly took its toll. As a child, I did not have the resources I have today. I expressed my disagreement with the descriptions of me by crying, howling, and hitting myself. These were valid and clear expressions, but were not understood by the others. They were not considered to mean anything. My protests ignored, I came to believe that what adults said about me must be the truth. Shy and rebellious and selfish and warped became the ways I thought of myself. Became the ways I behaved. The consequences were serious and real.

At least they didn’t write it down and sign my name to it.

It took many years to erase the picture of me that had been created by others, the picture they felt they had a right to draw because I didn’t talk much, preferred solitude, and had all-consuming narrow interests. It took more years than it might have otherwise to learn who I really was. Now, as an autistic adult, I find I must constantly defend my right to speak on matters related to autism. Meanwhile, a person without direct experience of autism seems not even to question his right to sign another human being’s name to his own political agenda. After all, David is a child. His child. One who doesn’t speak much. A readymade puppet.

Why didn’t this dad just use his own voice to make his points? I guess he thought it made a more powerful statement this way. A few years from now, David may have an interest in talking about his experiences. I hope that he will not be silenced because someone read one too many fictionalized “first-person” accounts, explaining what autistic people really think.

Autistic Awareness: Empathy

2009-07-07T15:05:00.001-04:00

What happens in San Diego

2009-06-29T16:52:00.004-04:00

The first thing you notice is the fruit. Huge bowls overflowing with grapes, cantaloupe, honeydew, pineapple, watermelon, blueberries, strawberries, lit by the morning sun. The contrast with the usual conference fare of bagels, pastries and small anemic fruit plates sets the tone for the entire event. There will be little “junk food” here, little talk of an epidemic and what could be causing it. Participants have come to learn more about how to understand and support autistic people. How to listen to different voices, how to think about differences in ways that nourish and enrich human lives.

In the auditorium, I am greeted warmly by Dr. Anne Donnellan and Martha Leary. They have brought a gift from Australia, a companion for Squawkers McCaw. They point out the autism-friendly green room just off the stage, inviting me to make use of this space when I need time away from the crowds. Long before my co-presenters, Steve and D’oC have arrived, I am among friends.

I settle into my chair to listen to the first presentations of the conference. I hear that nearly everything commonly said to be true about autism is based on the observations of non-autistic people. Motives are attributed to observed “behaviors,” interventions are designed based on these interpretations, each step moving further away from the reality of autistic experience. Built upon this “invented knowledge” are a number of lucrative fields for “experts.” Yes, this is a problem, one which can only be solved by learning to listen to those who have direct experience of autism.

Most of those in attendance are educators. They are attentive, eager to participate. Each session could easily have been twice as long; there are so many questions. Relevant questions. Thoughtful responses. Two rows ahead of me, a woman types every word she can catch into her laptop. The typing is loud, but I know she will carry important thoughts away with her to share with others. I have a little book with me for drawing squares, and this helps make the sounds of the keyboard go away. Later, before Nan Negri’s session, she asks for anyone with sensory sensitivities to speak with her. She wants to warn us that loud music and noise will be used in some of her activities. She wants to know what accommodations we might need for this. She will let us know when something is about to happen, in case anyone needs to leave.

At one of the breaks, a woman approaches me and says how happy she is to see Squawkers. My daughter carries a Spongebob everywhere…I know from a comment she made earlier that her daughter is twenty years old. I know from the way she looks at me that she does not see this as a problem. Throughout the days of the conference, I have several interesting discussions about parrots. One man tells me about the Amazons that live at Ocean Beach. He has seen macaws flying over this campus several times throughout his years in San Diego.

Early Friday morning, Steve, Do’C and I take the stage to discuss autism blogging and a variety of issues important to the three of us. The audience cheers as Steve reads the conclusion of The Best Story Ever. Do’C asks some questions of the group. Who here has a child on the autism spectrum? Would you be willing to stand up and say that your child is not broken? One after one, they do this, with increasing intensity and conviction. The room echoes with the voices of women and men expressing pride in their children. Like any other parents.

They gasp at the depictions of autistic children as soulless and tragic. These sounds are important to me. They mean that the images are shocking and inexplicable, not necessary and matter of course as some would have you believe. They laugh at the idea that I am “not really autistic,” or entitled to a voice, as I have sometimes been told by others. They are as puzzled as I am that ideas like understanding and acceptance of differences have proven so controversial. After the presentation, a young woman, one of the teachers in the group, comes to the stage. I have been hiding, she tells me. She has not told many people about her diagnosis, she has been told that a “label” could only make her life more difficult. Nodding toward Squawkers, she asks me, Do you ever let anyone…

Yes. I place him in her arms. I have an animal too, she says. Later, she will bring him in from the car. She will join the panel session, speaking openly from the stage about her experiences as an autistic woman. Many others speak to me—the teacher who took off (for good, she promises) a puzzle piece necklace during the presentation, the mother who wept because she has searched for ten years for someone to agree with her that her son is an acceptable human being and did not need to be fixed.

They ask me to continue. They want to know more. I am happy for this, but unable to say much. I go to the quiet place for a long, long time. There will be a question and answer period this afternoon. There will be more time, another break, another bowl filled with apples, bananas, cherries and plums. Again, I am refreshed and revived by the spirit of acceptance at the core of USD's Autism Institute. As always, I will leave here with so much more than I brought to the table.

Beyond Awareness

2009-06-15T11:58:00.006-04:00

For the third time, Autism Hub bloggers Steve D. (One Dad's Opinion), Do'C (Autism Street) and I have been invited to present at The University of San Diego's Autism Institute. The summer Institute will be held June 24-26 this year on USD's campus, and the title of our program is "Beyond Awareness." I very much appreciate USD's commitment to include the perspectives of autistic people and others who advocate for acceptance, inclusion and individualized supports. If you are in or near San Diego next week, please join us at the Institute!

Häagen Dazs Vanilla Swiss Almond Found "Not Helpful" in Treatment of Autism

2009-06-10T10:14:00.006-04:00

Following on the heels of the shocking news that the prescription antidepressant Celexa® does not cure autism, scientists have discovered that the highly touted Häagen Dazs Vanilla Swiss Almond ice cream also does little or nothing to quash the intense focus on narrow, restricted interests associated with the disability. Dr. Martin Geiger announced Tuesday that a group of autistic teens treated with HDVSA failed to become indistinguishable from their peers in what he described as a “totally random controlled experiment.”

The scientific community first showed interest when Flossie McVey, a young autistic woman living in Dubuque Iowa, lost interest in her collection of stainless steel rotisserie forks after consuming two pints of the rich and reportedly awesome dessert. Upon further investigation, McVey was determined to have simply fallen asleep. Undeterred by this apparent setback, researchers carried on with the two year study. Participants gained an average of twelve pounds, but continued to study ceiling tile designs and to watch reruns of Star Trek: The Next Generation at the same rates as those who ate only Dryer’s Double Vanilla Bean.

All hope is not lost, according to Dr. Geiger. “Häagen Dazs is working on a new Acai Berry flavor, and we have high hopes for this. The berry has gained enormous credibility through its repeated appearances on the Oprah Winfrey Show.”

A Conversation with Martha Leary

2009-06-09T10:31:00.014-04:00

Martha R Leary does training and consulting on creative ways to support people on the autism spectrum and those with other neurological differences, throughout Canada, the US, England, Ireland, and Australia. Martha is a Speech Language Pathologist and has worked in this field for over 30 years. She has authored and co-authored a number of publications on sensory and movement differences emphasizing how those differences might affect other people's assumptions and the ways in which they provide support. Martha and David Hill currently have a paper in press about the support relationship. When she is at home in Halifax, Nova Scotia, Canada, Martha is an urban farmer.

Bev: In your writing and presentations with Dr. Donnellan, the two of you talk about the social interpretations that are often imposed on descriptions of autistic ways of moving. In contrast, movement differences in people with Tourette’s or Parkinson’s are usually accepted as involuntary, and rarely analyzed as if there were a psychological origin.

Martha: Thanks for asking about this. In the early 1990’s a small group of people interested in autism began studying the literature on what are called movement disorders. We lived and worked all over the continent and beyond: Toronto, Ontario; Madison, Wisconsin; Gainesville, Florida; Pennsylvania; Connecticut; Indiana; Bath, Birmingham & Bristol, England; and more recently, San Diego, California. We got together whenever we could at national conferences like TASH and at ‘salons’ held by Anne Donnellan in Madison, Wisconsin. We wondered if differences in people’s ability to organize and regulate sensory information and movement could mask competencies and create the widely-held impression that people were behaving in an unusual manner ‘on purpose’ or because they lacked insight into how other people behave.

We looked outside of the autism literature because that literature often did not reflect research in other areas of human experience. We worked on trying to understand the personal experiences of people who had acquired common movement disorders such as post-encephalitic Parkinson’s disease, Tourette syndrome and classical catatonia. Although we understood that growing up with a sensory movement difference was likely to be quite different from acquiring a difference later in life, we wanted to listen to the voices of people with neurologically based sensory and movement disorders. We listened to people describe how they may intend one thing and do something quite different or how a person might be just as surprised by his own symptoms as an observer might be.

We examined the common assumptions about the nature of behavior in autism. Many of our assumptions about behavior were based on the medical and behavioral literature in autism. Behavioral literature had described most unusual behaviors as learned behaviors that could be shaped, extinguished or reduced through behavioral technology. Learning challenges were categorized as intellectual and cognitive deficits without consideration of the neurological symptoms behind such challenges. The medical literature on autism used the diagnostic and statistical manual of mental disorders (DSM) to describe autism for medical practitioners. The DSM did not name neurological symptoms (e.g. abnormal posture, abnormal muscle tone), but instead focused on the resulting behaviors (e.g. failure to cuddle). The DSM had used phrases such as ‘prefers to’ to describe symptoms with which people struggled and failed to mention the likelihood that many unusual behaviors had a neurological basis.

Our learning was supercharged by a growing number of autistic people (or people with autism) who were writing and speaking about their own experiences. Without the stories from autistic people, for example: Michael; Jenn; Mark; Steven; Shawn; Sue; Peter; Ashanti; Kathleen; Art; Peyton; Thomas; Donna; Jordon; Barbara; Eugene; Cathy; Danny; Shawna; Ken; George; Jonny; Emanuel; Tito; Temple; Andrew; Bill; Kyla; Dan; Melanie; and Luke, we would have been kept in a cycle of endless repetition of assumptions. What a wonderful time to take our journey; Lots to read and more and more people to listen to as we traveled. Perfect.

Bev: This really gets at the core of what I appreciate most about your work--the fact that you listen to autistic people. There are so many folks out there who seriously believe that autistic people are not qualified to explain much of anything about autism. Or who believe that anyone who can talk about such experiences somehow doesn't qualify as "really" autistic.

The whole question of doing (or saying) things "on purpose" is complicated. Sometimes I squawk! I think of this as semi-voluntary. The problem with defining it is that (sometimes, at least) my choices are limited: I can either say nothing, say something that has nothing to do with what I really mean, and which might make the situation worse, or I can squawk. At other times, I have different choices, and when the choice to say what I really mean presents itself, that is what I do. But the fact that I can do that at times is taken as evidence that the other times, the silent times, the squawking times, are representative of my "choice" not to communicate properly. I can argue about that, or I can accept that I am seen as a rather silly-acting person. Since I'd rather be seen as silly than incompetent or uncaring, I have accepted that view for a long time .. It has, to a large extent, become part of how I see myself, so much so that I don't usually know for sure if I'm joking or not. Or I both am and am not joking at the same time, and that can either be unnoticed by people or taken as passive-aggressive or somesuch. It's a little frustrating to be aware of all these layers and possibilities all of the time, and to know that I have so little power to change how I am perceived. I guess that's why I write.

Martha: I’m glad you brought up the subject of intention. There have been many fine academic and research attempts to define intention, intentional, voluntary, etc. over the past century and I will not wade into those waters today. I agree that this is an extremely complicated topic and one that fascinates me. When I speak to people about the possibility that a person’s challenges may be related to organizing and regulating actions, postures, speech, thoughts and emotions, the notion of ‘on purpose’ rears its lovely head. People describe an event that did not go well for someone and demand to know, “Was that a sensory movement difference or was that a behavior?” I like your idea of semi-voluntary squawking.

A friend of mine who experiences a significant and powerful movement difference once accompanied me several city blocks to a favorite restaurant. He ran down the street backwards about 10 feet ahead of me as I walked, briskly, in the same direction. While he ran, he told me of his strong feelings for sharks and how the shark was losing habitat and being slaughtered for being a predator. It was not easy for him to express these opinions as he was running backwards, glancing over his shoulder for pedestrian traffic and shouting so I could hear. When I later asked him why he ran backwards, creating a situation where he risked physical calamity and made an interesting conversation into a shouting match, he responded that he had done this out of choice. He ran backwards as a choice over sniffing the tailpipe of each car parked at the curb of the streets we traveled. This sniffing took copious amounts of time and he thought we might be late for our luncheon date with our friends. This sounds a lot like semi-voluntary squawking to me.

Bev: What have you been working on recently?:

The developing understanding of sensory and movement differences for people with autism naturally leads to consideration of the numerous ways in which people have adapted to these differences and increased their participation in daily life. Phil Schwarz recently referred to autistic adults developing a “parsimonious use of the bandwidth” with age and experience that incorporates a “coherent autistic aesthetic sensibility” that includes a love of sameness, preferred patterns and predictability. Others have referred to these as accommodations.

I think of accommodations as adjustments or adaptations of an interaction, a task, situation, or the environment that assist a person to temporarily get around difficulties organizing and regulating actions, postures, perceptions and sensations, speech, thoughts, emotions and memories. Oliver Sacks (Awakenings, 1990) wrote eloquently about accommodations developed by his patients with post-encephalitic Parkinsonism. In my work, I have focused on understanding accommodations that I see people using, explaining them to others as a way of supporting competencies that people have developed. I have also worked with people to discover new accommodations that may be useful. My persistent perseveration is rhythm. Those interested in going deeper may look at the recent work of Hanneke De Jaegher.

I would love to hear more about accommodations that you use to support speaking.

Bev: The most important thing for me has been understanding autism and how it has shaped who I am. Before I realized that I was autistic, I saw each of my differences as separate “problems” or ways I was defective. I couldn’t participate in conversations with more than one person. Sometimes I couldn’t speak at all, especially when someone was asking me questions. I had obsessions that ruled every minute of my days. I seemed to make people angry a lot without knowing why. The way I moved was just one more “thing” that was “wrong” with me. People would ask me, “Why do you walk like that?” I had no idea. I can’t walk across a crowded room without running into several people. Going to stores is a nightmare because of this, so many people moving in different directions at different speeds, stopping and starting, and I can’t calculate fast enough where I am supposed to go. I end up standing still in the aisle until there is enough space around me to move freely to my destination.

Anyway, figuring out that all of this is somehow connected helped immensely. I am more comfortable with my differences now, and I don’t worry as much about being understood or how I am perceived by others. That reduces the anxiety a lot, allowing me to go places I would not have gone before. Speaking at conferences, traveling across the country alone, these are not things I would have imagined being able to do a few years ago. Of course, I am still autistic, but knowing this has helped me redirect my obsessions in ways that are safer, my need for sameness can be honored in ways that don’t demand such a restricted life.

I’m interested in exploring the concepts of speech, and even thought, as types of movement. I don’t know much about the research on this, but intuitively, I feel a strong parallel between the way I move and the way I talk. Sometimes, my thoughts get “stuck,” and sometimes my words pace back and forth or lurch forward unexpectedly. It’s clear to me that the same sorts of things are going on at every level of my being. As for rhythm, I often use the repetition of words and syllables, and also tapping to keep myself on track. Drawing squares and other patterns is helpful, too. These are a few of the things that keep me focused and available to participate.

Bev: I’ve talked a lot here, and I want to be sure you can get the last word in. What else would you like readers to know about your work?

Martha: I want you to have the last word.

Bev: Squawk.

Note: I met Martha in January of 2008, when several Autism Hub bloggers were invited to present at USD's Autism Institute. Steve D, Do'C, and I will be presenting again at the Institute later this month. This will be our third appearance there, and I very much look forward to seeing everyone again.