The Problems with "Asperger's"

One of the most common questions I have ever heard or read online is, "Are Asperger's and autism the same thing?" Of course, there are nearly infinite iterations of this question, asking what the "differences" are between Asperger's and autism, and whether Asperger's is a subset of autism versus a mild form of it, or unrelated entirely. (There is not a general, broad-based consensus on the answers to these questions.)

The only current diagnostic difference between receiving a diagnosis of Asperger disorder or Autistic disorder is that in order to be diagnosed with Asperger disorder, an individual must have "no clinically significant general delay in language."¹ There is no other difference in diagnostic criteria, but that one difference that does exist is not only negligible but scientifically invalid and nonsensical. (This, of course, does not consider the very viable argument that autism should not in fact be included in the DSM, which is a manual of psychiatric disorders according to its own title, as autism is not a psychiatric disorder but a developmental disability.)

If all Autistic people have innate differences in communication and social interaction -- primarily with expressive language rather than receptive language -- then it does not matter at what age the Autistic person develops actual speech. All Autistic people will have neurologically divergent communicative abilities, whether for informative or social purposes, throughout the life span. Besides, it is acknowledged in nearly every publication discussing "Asperger's" that people who receive that diagnosis have communication and social problems throughout their lives resulting from their information processing differences.

Attempting to create an artificial divide between people who are "just Asperger's" and "actually Autistic" not only contributes to divisiveness and disunity among the Autistic community, but also does us a disservice by communicating false ideas to the world beyond our own community. As an Autistic friend of mine recently observed in a note on Facebook, the proud use of terms like Aspie and Aspergian is frequently associated with the so-called Aspie supremacists -- those who believe that they are genetically or otherwise superior to non-Autistics on the basis of the Asperger's diagnosis. (Some of the same endorse the rather absurd neanderthal theory of autism, that Autistics have more neanderthal genes than non-Autistics. Others buy into the inaccurate and harmful high and low functioning dichotomy.

The friend who authored the note encouraged Autistic adults and allies to avoid using the "Asperger's" terminology except when discussing the specific diagnostic label or its history. I agree with him.

Earlier today, I was interviewed at the Autism Women's Network weekly radio show along with three other people, one of whom repeatedly used the term Aspie and described some Autistics as from "the higher-functioning end of the spectrum" (though she did later question the validity of this false dichotomy.) I frequently read writings or postings from other Autistic adults in the community who prefer to describe themselves as Asperger's, Asperger autistic, Aspies, Aspergians or Aspergerians, or "mildly autistic." (When I was first diagnosed, my parents explained the diagnosis as "a mild form of autism." This is apparently common.)

These terms reinforce several false and dangerous notions:

1.) They reinforce the stereotype of autism rights or neurodiversity activists and advocates as Aspie supremacists. Most of us are not Aspie supremacists. We seek equity -- that is, equal access and opportunity as our non-Autistic peers across the lifespan in all facets of life -- acceptance, and respect, but not a new order with Autistics ruling over the poor non-Autistics.

2.) They serve to alienate those of us who do not use that kind of terminology, and those who have never received the "Asperger's" diagnosis, by separating one group of Autistics from another.

3.) They support the idea that some Autistics are fine as they are while others should be cured or fixed, by suggesting that it is okay to be Aspie or Asperger's while allowing for "autism" alone to be a negative, devastating experience. This creates a false distinction between "types" of autism. Some Autistics may be more disabled or more visibly disabled than other Autistics, but there are not different "types" of autism or Autistics outside other conventional types of diversity and individual experiences.

4.) They deny the disability experience of autism by creating connotations that align with the Aspie supremacist notion of "Asperger's autism." While the social model of disability is generally constructivist, it is extremely dangerous to deny that Autistics experience disability, including those who may be more mildly or invisibly disabled or able to "pass."

Asperger's is a term that carries far more baggage than it should, and until we can academically and objectively dissect its use and history, continued emphasis on this label and its associated labels will only harm the community. This is why I cringe when I hear people use the terms "Aspie" and "Asperger's," because every time someone insists on these types of terminology, that person emphasizes and reinforces some very dangerous ideas.

We are at a point where our community needs to foster as much unity and solidarity as possible, and one of the ways in which we can do this is through the language we use to refer to ourselves both within and outside the community. I do now and always have supported the right of individuals to determine what they wish to be called and how they wish to refer to themselves when using identifiers, but I urge those members of the community who are reluctant or less frequent to identify themselves as Autistic to consider the ramifications of this single, unifying identity label.

Using Autistic is a symbol of solidarity with all other Autistic people, because it emphasizes our similarities down to our very neurological wiring rather than calling attention to superficial or socially constructed differences in our apparent abilities. It makes it harder for those opposed to neurodiversity to draw on the high-low functioning dichotomy or the differences in criteria for diagnostic labels, because the word "Autistic" is all-encompassing. Autistic refers to any individual whose neurology is divergent from the typical range of variability enough to cause core characteristics of autism in information processing differences. It pays no attention to specific abilities and challenges, as these vary in every group of people. It pays no attention to specific diagnostic labels, because labels themselves are a social construction as essentially invalid as monetary value.

Autistic is an identity label that reclaims the notion that it is okay to be Autistic in any form, with any diagnostic label, with any manner of visibility of disability, with any severity of disability -- and that we are of equal value and significance as Autistics both individually and as part of the community.

--

¹American Psychiatric Association. (2000). "299.80 - Asperger disorder" Diagnostic and statistical manual of mental disorders (4th ed., text rev.).

End the torture. Make this go viral.

Trigger Warning:
Torture and abuse on video.

--

For decades, the Judge Rotenberg Center in Canton, Massachusetts has been torturing and abusing people with disabilities in the name of treatment. Residents are subject to electric shocks, food deprivation, prolonged restraint and seclusion, and forced witness of these same tactics used against other residents.

This video of Andre McCollins, then-eighteen, who has behavioral and mental health issues, has been sealed by the courts for the last eight years. Yesterday, it played in open court during his trial against the Judge Rotenberg Center.

Make this go viral.

Download the video to your hard drives; upload it elsewhere; share the links.

The public must see what the Judge Rotenberg Center is doing. Their experts claimed that the public would not understand the content of this video without "proper context." There is no context that justifies the use of torture against anybody ever. The public has not merely a right but a responsibility to watch this video and share it everywhere.



The majority of the Judge Rotenberg Center's residents come from New York, which has banned the use of electric shock on its residents. Massachusetts passed regulations last year that prevent the use of the electric shocks on any new admitted resident. But the Judge Rotenberg Center has survived decades of attempted legislative efforts to ban the shocks completely, and it is still fighting every small step taken to end its practices of torture and abuse.

This is not electrostatic therapy that has been scientifically proven to help with symptoms of depression, bipolar disorder, and related disorders.

This is not a "treatment" with any long term efficacy. Some of the residents at the JRC have been there for over ten years, and they still have the same behavioral problems as when they entered.

This is not "the only treatment that works." The JRC likes to make this claim, and it is wrong. There are programs at other institutions across the country that serve the same population with the same challenging behaviors -- self-injurious and destructive -- that do not use torture and abuse and that do have proven long-term efficacy in reducing and eliminating dangerous behavior.

This is torture and abuse.

Public outcry is often the impetus for change. If millions of people demand the closure of the JRC, can their millions of dollars in lawyers and lobbyists stand up to public outrage?

Make this go viral.

Culture of Shame

Growing up, my understanding of "disability" was limited to signs for "handicapped parking" with a white stick figure in a wheelchair and "special needs" children, who were always looked at from afar, and who would be described in low, quiet tones just in case they heard themselves being described.

I was not diagnosed until I was thirteen.

The word disability was not a word I associated with myself for years after receiving my diagnosis. It's not a word with a very positive history or even a well-known one.

Our children learn about Martin Luther King Jr. and Mahatma Gandhi and Susan B. Anthony. But who reads biographies of Ed Roberts or Judy Heumann? Who hears about Deaf President Now or the passage of key disability rights legislation? We know "one nation with justice and liberty for all," "these truths are self-evident, that all men are created equal and endowed by their creator with certain inalienable rights, and that among these are life, liberty, and the pursuit of happiness," and "I have a dream."

Why is "disability is a natural part of the human experience" missing?

Where did those "special needs" children go?

Why was I invisible?

Right now, I am typing this post on my phone from the third row of a Megabus, sitting next to a student at Howard University in a denim jacket with a brown leather bag. We're two hours behind schedule. I-95 has been more or less a parking lot for several hours.

Earlier, the woman in front of me shared that she works with Autistic high school students in a mainstream program. We had a long conversation about the false dichotomy of functional labels and tools to support younger Autistics.

I don't think anyone else on the bus heard.

Outside a fairly insular community rife with dividing lines and explosive tempers, "autism" is something relegated to "special schools," tacky "awareness" campaigns in April, and "very special episodes" of popular TV shows. I don't know the young woman sitting next to me, but there's a decent-sized chance that she knows verry little about the lives of Autistic people, much less the fight for a civil rights model of autism. She would probably be surprised if I told her that I am Autistic.

Stereotypes and misconceptions about Autistic people are by no means gone. I have been asked if I am a savant, and I have always replied, "No," because I'm not. We are not homogeneously "children with special needs in the corner," whose very existence must be spoken of in such cautious and overly dramatic tones. Our existence deserves better than pity and empty stereotypes.

Sometimes I wonder where all of the disabled children from my childhood have gone. Their existence was hardly acknowledged, and I escaped that ignominious experience only because my disability has always been largely invisible. Where are they now?

I met a young woman with multiple disabilities, most likely learning and developmental disabilities, who screamed at me in rage, with terror in her eyes, as she shouted, "You can't define yourself by your disability! You can't!" There was such desperation in her voice.

What have we told our children about disability?

After I was diagnosed, my eighth grade year was mostly over. My mother told me not to tell my classmates about my diagnosis because it would only be another excuse to make fun of me. She encouraged me not to bring books with autism or Asperger's in the title to school with me.

I listened to her.

Autism, Asperger's, disability -- these became unspeakable words. Not To Be Uttered.

I wonder whether talking about disability openly and frankly would have been the better decision, both for my classmates and myself. Students are frequently required to attend diversity education programs that expose them to a variety of cultures. Why should disability culture be different?

We are not acknowledged in mainstream society as having legitimate culture and community. Many people grow up and never meet any people with disabilities beyond perfunctory or parallel encounters devoid of meaningful engagement, never mind lasting relationships. I knew two Blind people growing up, a handful of hearing-impaired people, and the myriad of "special needs children" who in retrospect were all either learning disabled or Autistic.

The disabled represent the single largest minority group in America. As many as one-third of all Americans have a disability of some kind, either from birth of acquired, visible or invisible, physical or neurological.

Why isn't our history included in textbooks alongside women's history, African American history, and Jewish history? Where are our pioneers, our triumphs, our struggles? Why are our only acceptable public roles either those of the well-behaved token or the inspirational supercrip?

Why are we still largely invisible?

We have perpetuated a culture of fear, shame, and pity around disability. How else can you explain the way adults will pull small children aside and stage whisper, "He has special needs," while staring at another child, and expect this to mean anything other than, "He is different from you and you really don't want to play with him." Our history has been erased before it was written.

--

Typos and misquotes are because this was written entirely from my phone on a small keypad with a small screen while on a bus.

Avoiding Tokenism

Tokenism is defined in the dictionary as "the practice of making only a perfunctory or symbolic effort to do a particular thing, esp. by recruiting a small number of people from underrepresented groups in order to give the appearance of sexual or racial equality within a workforce." It is a sadly common practice in the world of autism, where Autistic people are frequently token Autistics rather than participating in an activity or leading an organization in any meaningful way.

These are signs that an Autistic is a token. Be aware of them and avoid them!

1. There are no other Autistic people on a board, council, or committee.
   If an organization, council, or committee represents, governs, advises, or leads an entity whose primary focus is on autism related issues, serving or supporting Autistic people, or representing the autism community in any way, there ought to be at least a few Autistic people serving on the board, council, or committee. In fact, there should be as many Autistics as possible, given that purpose. (Wouldn't it be odd if an organization serving the LGBTQ community had only one or no LGBTQ people in the leadership?)
   
   
2. The Autistic person has no real responsibilities or duties, and is not expected to contribute substantively.
   This is simply more evidence that the Autistic person is there solely so that those in charge can say that they have an Autistic person participating or in a leadership position. This can happen especially when the Autistic person is given an important-sounding title, such as "Vice Chair" or "Co-Executive Director" or "Program Coordinator." The Autistic person in this position is frequently assumed to be incapable of carrying out actual responsibilities. Conversely, the Autistic person may be actively impeded in attempting to take on responsibilities.
   
   
3. The Autistic person is not expected to express opinions, and in fact is expected to comply quietly with the organization's official platform.
   This happens when an Autistic person is actively or passively prevented from expressing his or her opinions or ideas, particularly of the organization that has included or appointed him or her, and expected to go along with whatever the organization's leaders say or do without protest, even if they do or say something that the Autistic finds offensive, hurtful, demeaning, or ineffective.
   
   
4. The leader(s) admits that the Autistic person was included or appointed solely or primarily because he or she is Autistic and not because he or she was otherwise qualified to serve or work in that position.
   This is also called "bad affirmative action." Yes, if it's about autism, you should have Autistic involved at all steps of the process because they are Autistic, but people should always be qualified to be doing what they are doing. If we're talking about a scientific research review board that reviews papers about autism-related studies, the Autistics involved should have a scientific background of some sort. (If they're community grant reviewers, that's a different story.) If we're talking about the administration of an autism-specific school, the Autistics involved should either have attended such a program in the past or have an educational background. If we're talking about an executive officer position in a nonprofit serving Autistics, the Autistic hired should be otherwise qualified to be in an executive position. We are not identical people who can be substituted for each other like mass-produced clones.
   
   
5. The Autistic person is excluded from the decision-making process or main working process.
   This defeats the purpose of meaningfully including Autistic people altogether. If an Autistic serves on a board or council or committee, he or she should have as much say in the decision or working processes as anyone else.
   
   
6. There are no plans or intentions to include or appoint other Autistics.
   When this happens, it is clear that the Autistic included or appointed is a token representing the bare minimum of effort required to appear to have included Autistic people.
   
   
7. The Autistic person is treated in a condescending and patronizing manner by colleagues, and this is considered acceptable and normal.
   This is also called workplace bullying, hazing, and ableism. Don't talk to us in a baby voice. Don't praise us for every ordinary thing expected of everyone, like showing up on time, putting things in the recycling bin, or finding a parking space. Don't treat our opinions and ideas as meaningless fantasies. Respect us because we are people.
   
   
8. Any leader in the organization treats the inclusion or appointment of the Autistic person as an, "oh how sweet" or "oh how nice" moment.
   See above.
   
   
9. The inclusion or appointment of the Autistic person is made out of pity.
   See 4 and 7.

Stop killing us.

Trigger warning: Extensive discussion of murder of disabled people.

--

Stop Killing Us

I don't know why we need to repeat this so often, but it seems we repeat this in vain.

This past Saturday, four year old Daniel Corby from San Diego, who was Autistic, was drowned by his mother. (She was thankfully arrested.)

That was March 31. March 30 and March 31 were days of mourning. Self-advocates and allies organized vigils in eighteen cities across the United States in memory of disabled people, many of them Autistic, who were murdered by family members or caregivers. Their names were read.

But this keeps happening. Over and over and over again.

Are our lives really worth that little?

Has the media really painted such a stark picture of how tragic it is to be Autistic?

Does our society really have this ingrained attitude that it's okay to kill us?

The answers are apparently yes.

These should be prosecuted as hate crimes, because the victims are always murdered because of a protected status -- disability. In fact, being disabled is the sole or primary motivating factor in their murders. Were they not disabled, they would not have been killed. Period.

And the media continues to glorify and justify and sympathize with their murderers. Were any other person murdered by a family member, the public outcry would be enormous. In the Caylee Anthony and JonBenét Ramsey cases, the media vilified the murderers -- in Caylee's case, her mother was convicted in the court of public opinion after her legal acquittal, and in JonBenét's case, the family was later partially exonerated. Whenever the victim is not disabled, the media and the public heap the blame on those known or believed to be responsible.

Yet in the cases of disabled victims, the media does not speak up for the victim. Even when the killers have confessed or when it is obvious who the murderers were, the media pours sympathy onto the murderers. Articles about these cases emphasize how stressed the murderers were with the burden of having a disabled family member. They emphasize how difficult the victim was to live with and how the victim's deficits and challenging behaviors drove the murderer to the edge.

In short, society blames the victim and exonerates the perpetrator.

This is the same thing as blaming a woman for her rape because she wore a short skirt or had a low neckline on her shirt. It is the same thing as blaming a Sikh man for his assault because he wore a turban. It is the same thing. There is no difference.

And each and every time society excuses the murder of a disabled person, our lives become worth a little less. And it becomes easier for the next murderer to kill one of us, knowing full well that the likelihood of receiving an extremely lenient sentence, possibly with little jail time if any, is very high. And it continues.

It continues.

And one by one, we die.

"Stop killing us," we say. But our voices are so insignificant and powerless that it is no trouble at all to ignore them. You don't even need to acknowledge that our voices exist. All you need to do is shower heaps of sympathy for people who commit murder, and you can walk away with your conscience clear while we suffer in silence and wait for our turn at the chopping block.

Stop killing us is the last, desperate plea of people who have been backed into a corner from which we cannot escape. We have been reduced to adenine, cytosine, guanine, and thymine compounds that can be easily and quickly composted. Our humanity has been stripped to its most basic nucleic acids, so that we cannot even claim to be fellow human beings anymore. And we are to be grateful for being allowed to exist, for being allowed to be a burden to our societies and communities, so long as we remain still and silent like the well-behaved, compliant Others we have been made to be.