In Support of Michelle Dawson and Her Work
Michelle Dawson is an autistic woman who has been fearlessly standing up for the rights of autistic children and adults in Canada. Her open letter No Autistics Allowed, which spotlighted the exclusion of autistic people from a meaningful place in the Canadian autism societies and the often-frightening practices of said autism societies, gained signatures from autistic and non-autistic people all over the world. She has since written several other articles at her site, No Autistics Allowed: Explorations in Discrimination Against Autistics. Her legal and scientific knowledge and writing skills have cut to the heart of many important matters pertaining to rights and equality for autistic people.
It is inevitable that such writing will be controversial and produce a backlash. And now we see it, in an attack on Michelle Dawson containing a good deal of unfounded speculation: A Mother's Perspective, written by Kit Weintraub of FEAT and hosted by the Association for Science in Autism Treatment, which says it doesn't normally host opinion letters but thought this was just too important not to print. It is in response to Michelle's article, The Misbehaviour of Behaviourists.
Taken as a whole, "A Mother's Perspective" is primarily ad hominem and strawman arguments against not only Dawson but everyone who uses "autistic" as a noun. Dawson herself says that she would welcome criticism of her article, but that she would prefer it be legitimate criticism of the content of her article, not unfounded attacks on her character. As it is, Weintraub's article is little more than the standard irate email that anti-cure autism websites get on a regular basis, and the only good thing about it is that it shows that Dawson's work is being widely read.
The rest of this article will describe the problems with the letter to Dawson, but it also applies to most of the similar letters that autistic people receive on a regular basis. As such, we will be taking some examples from our own experience of letters like this, and hope that people considering writing letters like this to any autistic person consider our points.
Weintraub's first point is to make a semantic distinction between people who have autism and autistics, claiming that autistics is a new politically-correct term for people who think that autism is only a personality difference that carries no problems with it and makes people superior to the non-autistic world.
She has it backwards: Person-first language -- person with autism, person who has autism -- was a "politically correct" formulation imposed on top of the already-existent and clearly understandable autistic people and autistics. Significantly, it is not a phrasing started by autistic people; it was started by people who presumed that they spoke for autistic people. In reality, most autistic people who have anything to say about it will say that person with autism is not only difficult to understand (especially with language processing problems) but factually inaccurate (autism cannot be separated or removed from an autistic person like clothing) and potentially insulting (it implies that there is something so negative or shameful about autism that it is incompatible with being a person without turning the language around to point it out). One of the common autistic perspectives on this can be found in Jim Sinclair's article, Why I Dislike Person-First Language.
The same person wrote previously on xyr perspective in a Usenet post, stating:
But when I--and other autistic people--choose to refer to ourselves as autistic and express our preference for being referred to that way, and we are told that our opinions don't count because non-autistic people have decided it's better for us to be called something else, this shows absolute contempt for us as self-aware, communicatively competent people.
The idea of putting the "person first" in language makes about as little semantic sense as saying "White Christmas" is racist. [...] To put it bluntly, your prejudices are not our problem, and you should find ways to deal with your prejudices without trying to cut our nature off from our personhood. It is tremendously invalidating to say that people's basic perceptual and mental processes are so inferior that they're not compatible with personhood.
[Jim Sinclair, 1992]
Most of us who call ourselves "autistics" are not proclaiming our superiority, merely our lack of inferiority and the fact that autism even with all of its associated difficulties is inseparable from the rest of us. Some autistic people who refer to themselves as autistics even, unfortunately, believe they are inferior to non-autistic people. But merely asserting our equality is not elitist, even though it can seem like an imbalance to people who've been considered superior so long that they think that was balanced.
The article goes on to question whether Michelle Dawson is indeed autistic, and says that she is obviously intelligent and well-educated, but accuses her of lacking empathy and insight. It accuses Dawson in particular and the rest of autistics who share her positions in general of advocating the neglect of autistic children and the perpetuation of suffering. On the one hand Kit Weintraub claims that she does not want her children to be cookie-cutter people, but on the other hand says that if she could erase her son's quirkiness, she would, because people don't accept him for it. She describes medicating her daughter for her behavior and hospitalizing her to use a "tough" behavioral approach to get her to eat when she started having sensory aversions to food textures, and makes it sound as if this is the only possible solution to these situations.
Above all, though, Weintraub does the usual things that are done to dismiss the opinions of autistic people.
- She questions whether we are really autistic at all, showing the skills we do have, particularly intellectual and writing skills.
- She simultaneously makes accusations about lack of empathy, insight, or compassion that are often leveled against autistic adults who disagree with the presumed parental status quo for autistics.
- She mistakenly equates the statements "We don't want a cure," "Autism is an integral part of who we are", and "We don't want 'help' that harms us" (which we do say) with the very different statements of "We don't want help with anything", "We have great lives", and "We think all parts of autism are absolutely wonderful" (which we most emphatically do not say).
- She brings out descriptions of her children that are intended to show how different her children are from us, without ever meeting us to know how we were at their age or even how we are now. As Dawson herself says, "Now you can tell me when exactly it became good science to diagnose a person via the Internet."
- She makes it sound as if problems (when they are actually problems) have an all-or-nothing solution -- either her methods or nothing, and that this means Dawson is advocating neglect.
- She blames her children's difference for the cruelty that other people show to people who are different, thereby shifting the responsibility for their actions off of intolerant people and onto autism.
Now to address these ideas.
Being intelligent and educated does not mean being non-autistic. Many autistic people, including many who have been or continue to be described as severely autistic, mentally retarded, or low-functioning, have fit some standard view of intelligence and been educated, either in university or self-education. Even some who have been previously labeled ineducable.
Being submissive to the wishes of mainstream non-autistic parents gets us praised for our insight. When we stray from these wishes, and stand up for our own worth, that is when the very same people get told that we lack insight, compassion, empathy, and the ability to recognize suffering. It is also usually when they begin to compare us to their children. Those of us at autistics.org have all witnessed this about-face firsthand.
The messages about how different various children are from us can range from darkly amusing to frustrating for many of us. The children being described, depending on the context, range from similar to how we have been to similar to how we are now. Some parents tell us their children's lack of certain abilities means that all parts of autism need to be fixed, when we may have less of those abilities than the children being described. But they dismiss our views, and dismiss us as anomalies or liars.
To give an example, take the three of us who currently work on autistics.org, in the areas commonly cited by parents trying to claim we aren't autistic or at least aren't "like their children". Note that not all of these things are things we believe naturally stem from autism, but they are brought up frequently by parents in their quest to prove that we aren't fit to offer our opinions about autism. The following list makes us sound like a bundle of problems, but it needs to be said:
- We were officially diagnosed with autism at the ages of 4, 14, and 42. All of us would have been diagnosable in childhood were the proper knowledge available. While we don't believe that it should matter (and some of us don't believe in a distinction between AS and autism), we were not diagnosed with Asperger's syndrome, and some of us have been told rather emphatically that we are not AS.
- All three of us have significant digestive problems. One of us has a serious autoimmune disorder, another has had more minor ones. One of us has significant problems with voluntary movement. None of us qualify as extremely physically healthy. Two of us have a significant degree of chronic pain. All of us have allergies. Two of us are asthmatic, and two of us have very little stamina. Two of us have migraines, and all of us have sleep problems. Two of us probably have seizures.
- One of us lost skills (what people writing to us usually refer as "regression" and use dramatic body-snatching-like terminology to describe) in early childhood and again in adolescence, another of us is gradually losing them in adulthood.
- We have all been institutionalized, although for one of us it was a brief period during early childhood.
- None of us are fully toilet-trained, two of us have required adult diapers on a regular basis.
- None of us have communicative speech all the time, one of us has none. Two of us use augmentative communication devices sometimes, one uses one all the time. Sometimes even language isn't possible.
- Between us, we have accrued labels from professionals like mental retardation, low functioning, unsalvageable, non-communicative, in our own worlds, and aloof. Some of us still risk those labels when we go out in public alone.
- Two of us have been mandated to attend special education, two have been in remedial classes, and one has had a mainstream school significantly modify itself.
- Two of us receive significant amounts of state-funded services due to lack of self-care skills, the other sorely needs them but such things don't exist where that person lives.
- One of us is employed, two of us are not for autism-related reasons. Two of us have worked in "special" work programs, and the other has only been able to work at jobs that were individualized for that person.
- Two of us have significant trouble with things like crossing the street and safety in public in general. Two of us have been picked up by the police and subsequently sent to institutions for harmless but odd public behavior combined with inability to adequately communicate, and the other has had other negative reactions from the police. At least one of us can be gullible enough to get into serious danger with unscrupulous strangers in public in adulthood. We have had trouble either with understanding danger or perceiving when we are in danger.
- All of us either self-injure or have self-injured in the past, including in measures that go beyond the standard descriptors of severe self-injury in autistic people.
- Two of us have been significantly violent in the past, as described by others. The other has been considered to have "scary" behavior.
- All of us have at some point been described as incapable of communicating, thinking, and/or making decisions for ourselves. All of us are still in danger of being described that way in certain situations.
- We flap, finger-flick, rock, twist, rub, clap, bounce, squeal, hum, scream, hiss, and tic.
- None of us have finished college, and one of us didn't finish high school. None of us have been served well by the educational system.
- All of us have been told or had our parents told by "experts" that we have no significant future.
- Some of us have sensory issues that could not be described as minor.
- All of us have to regularly prove that we are capable of many things when other people assume we are not, and prove that we are incapable of other things when other people assume that we are.
- Two of us have had neuroleptic drugs administered to control our behavior as children.
- All of us have been hungry or starving.
- All of us have been ostracized and bullied in school beyond the range most non-autistic children experience.
- All of us are very prosopagnosic (faceblind).
- None of us are married or plan on marrying, and we are happy with this arrangement.
- Two of us have been through intensive behavior modification.
- One of us has been homeless, the other two have come close.
- All of us have been suicidal.
- All of us have been abused in ways which we couldn't tell about because of communication or social problems. Some of us sexually.
- We don't necessarily pass as anything close to non-autistic.
- All of us have had our lives threatened as a result of both other people's actions toward autistic people and aspects of autism without proper support from our surrounding societies.
A lot of people have trouble believing that an autistic person could fit any or all of the above descriptions and still have our opinions. They appear to think, "If only you knew how autistic people really live, you'd want a cure and approve of everything we did." Unfortunately for them, this isn't the truth. It's our opinions that are different, not necessarily our lives. And even if we had to live our entire lives in negative circumstances or without an adequate means of communication (as we have all done at one point or another), we still believe we would be worthwhile human beings and that curing us would not be the answer.
But that, while frustrating, is not the central part of the problem. We shouldn't have to "prove" ourselves in this demeaning manner, and the only reason we are being asked to do so is the opinions we state. People like us in all other respects, but who are subservient to the wishes of others, get fewer interrogations about their autism status, although some of them get equally-demeaning praise about "overcoming" their autism. As soon as we change our minds, others change theirs about us. Instead of being seen as the compassionate and definitely autistic people we are, we are seen as vicious and cruel people who don't understand real autism. People try to have it both ways, telling us we're not autistic and then insulting us by telling us that our autistic characteristics prevent us from being ethical.
We know because some of us have done that kind of subservience, too. Obedient autistic people get condescending praise like beloved pets, while the same autistics standing up for ourselves get treated like rabid wild animals masquerading as housecats. As Larry Arnold, an autistic man fighting similar battles in the UK, writes, "I am not a tame, house trained autistic, I am the feral kind. I am a wolf, not a sheep dog."
What happens to us is the same as what's happening to Michelle Dawson, and other autistic people who challenge non-autistic assumptions about us, our place in society, and how we should be treated: People discount us for who we are rather than what we say, even in cases (such as The Misbehaviour of Behaviourists) when it is clearly universal human rights under discussion, not a personal perspective on autism. Whether we meet someone's stereotype of autism becomes more important than what's being said.
There is one more claim of Weintraub's that is worth mentioning. She says that criticism of the actions of parents resembles the refrigerator mother stereotype. No, it doesn't. We don't believe these actions cause autism, we merely think that certain popular actions toward autistic people harm already-autistic people. Just because mothers have been persecuted in connection with autism in the past does not mean that all of their current actions are above criticism or reproach. But neither does Dawson, in her article, claim that the mother in question is a child abuser, despite Weintraub's claim to the contrary.
While those of us at autistics.org have a lot of the stereotypical traits many parents describe in their children, there are other stereotypes, ones that they place on us, that we do not fit. Here is some more information about us:
- We feel intense empathy and compassion for other autistic people, often enough to keep us awake at night, and it is fundamentally love that drives our efforts for the rights of autistic people. We are the ones who have experienced the "treatments" and labels under discussion, and we are the ones who have to pick up the pieces later from the damage done, for both ourselves and each other. We do empathize with other autistic people in our situations because we have been there, or know people who have. These things are not theoretical for us and we are not meddling bystanders. We are the ones who end up talking to other autistic people late at night about the "treatments" and attitudes that have driven them to suicidal thoughts and flashbacks, and we are lucky when it is not we who are having those thoughts.
- We do not believe that not curing autism means failing to help autistic people acquire communication skills or anything else to genuinely alleviate suffering. We question both the goal of curing autism and some of the methods that purport to alleviate suffering but actually cause more of it. We also question methods which cause more suffering than other methods.
- We understand from experience, more than even a very sympathetic non-autistic person could, the hardships that autistic people face as a result of discrimination and lack of opportunities. We do not believe that curing autism is the answer to these hardships, and we work to find the real solutions.
- We do not hate non-autistic parents, or think that parents don't love their children (although we also do not assume that they do, because the world is not an ideal place and we have seen, sometimes firsthand, far too much child abuse and parents verbally and otherwise declaring hatred for their children to believe that all parents love their children). There are non-autistic parents who agree with our views and goals, and they can be some of our strongest allies. We do not stereotype all non-autistic parents just because we have encountered "bad" ones.
- We do not find every aspect of autism pleasant. This does not mean, however, that we believe we can or should separate autism-as-a-whole from who we are.
- We do not believe that it is just "the abilities that autism imparts us" or some similar construct that makes being autistic worthwhile to be. We think autistic people would be worthwhile as ourselves without "special" skills, but neither should the skills of some autistic people be ignored.
- We do not think we are superior or inferior to non-autistic people, although we may be better or worse at doing certain things and may prefer our current lives (as autistics) to non-autistic lives, just as we assume non-autistic people prefer being who they are. (Some autistic people do see themselves as superior, however. Others, including some who see autism as a part of them, see themselves as inferior.)
- We are not "self-proclaimed high-functioning autistics", as at least two of us (who have been considered both) don't even believe in a distinction between high- and low-functioning, and neither does Michelle Dawson. We in fact believe that calling autistic people high-functioning is a common way of dismissing our viewpoints, and calling autistic people low-functioning is a common way of maintaining control over us. This, in turn, does not mean we believe there are no differences between different kinds of autism, or between the ways autistic people with different "functioning" labels are treated.
- Some of us assist parents in finding solutions of how to raise their children in a way that respects their uniqueness, including autism, and does not hurt them, but also helps them grow. We do not think of parents as the enemy, nor as refrigerator parents, but we have little patience for the particular parents who insist we are bad for discouraging harm to autistic children. We are not oblivious to the difficulties involved in raising autistic children, particularly in current societies, and we are not ignorant about possible solutions that don't involve mistreating people. We simply don't believe that being the parent of an autistic child, or even loving one, means that a person suddenly becomes incapable of harming that child.
- While whether or not we are autistic has bearing in some of the things we write, it does not have any on others. We do not, contrary to the apparent notions some have of us, believe that only autistic people can fight discrimination against autistics, and we have non-autistic allies in this fight. For that matter, we don't even believe that all autistic people do or should have only one opinion on everything, and there are things on the autistics.org site (as well as Michelle Dawson's site) that some of us personally disagree with.
As for blaming autistic people's difference for the cruelty we receive, that removes the accountability of the people who are being cruel to autistic people. It makes it sound as if autism is to blame for the harm done to autistic people by others, which makes no more sense than saying accent and skin color are to blame for racism. When a person is being discriminated against for a quality, it's not that quality that needs changing. Being bullied on the schoolyard is not the fault of the autistic person for "looking like an easy target", and being socially ostracized is not the fault of the social aspects or "quirks" of autism.
We stand with Michelle Dawson in taking the position that it is discrimination against autistic people, and the acceptance of barbaric treatment of autistic people, that needs to change. And we strongly applaud her efforts to spotlight and change that discrimination, and, by her efforts, to help forge a place for people like us in Canada.
We urge autistic people who have websites and are tired of autistic people's opinions being dismissed and ignored in this manner to write something about what you think of this situation. If you don't have a website and want to show support for Michelle Dawson's work, you can do it by adding comments to her articles -- there is a "Comments" link at the bottom of each article. Also, feel free to link to this article if you want. The more the Kit Weintraubs of the world realize we are not isolated individuals, that we are not all the same, and that we are not always who or what they think we are, the better.
The People At Autistics.org
(many are not on this site, and, as it should be, we don't necessarily agree with every word):
Copyright © 2004