NY Observer Displays a Lack of Empathy

I have not yet seen this summer's Asperger's romance, Adam, and thus cannot provide much in the way of commentary on that.

I can, however, comment on the commentators, particularly the ones who express blatant bigotry. Such as Rex Reed of The New York Observer, for instance. Reed writes:

Far from just another exotic Disease of the Week, Asperger’s is an incurable neurological disorder similar to autism that turns outwardly normal-looking people into high-class idiot savants. I know at least two people with Asperger’s. They are incapable of thinking of anyone or anything outside of themselves. Challenged by social interactions and given to obsessive routines that revolve around a single subject of interest, they do not like to be touched, they feel incapable of explaining things and they cannot cope with people in general. Emotionally blocked, they say things that hurt and sting without meaning to be rude, and are weak at understanding, receiving or exchanging the emotions of others. They cannot look you in the eye. Adam is a fascinating study of a rare affliction in which all of these qualities are evident, in carefully researched scenes that are humorous and touching. It is lethal to get involved romantically with any person with Asperger’s syndrome, since they care nothing about other people’s feelings, needs or priorities. Almost without exception, they leave you perplexed, riddled with doubt and totally depressed.

Reed appears to have "researched" AS by reading Maxine Aston and like-minded souls. Let us count the errors and bigoted misrepresentations:

1. AS is "similar to" autism; actually AS is autism.
2. AS turns "normal people" into "idiot savants." Wrong on multiple counts. AS doesn't "turn" anyone into anything; it is merely a term used to describe how a person naturally is. And "idiot savants" is a bigoted, outdated term. And not all autistic people have "savant" skills even in the strict clinical sense of the word. I'm not sure that Adam's knowledge of astronomy would count. At any rate, no one would ever call a neurotypical person who knows a lot about astronomy an "idiot savant." See the neurotypical privilege list, which I can never link to too many times.
3. AS people are incapable of thinking of other people, caring for other people, other assorted stereotypes. Wrong, wrong, and wrong again.
4. AS people are "emotionally blocked." Huh? No. If anything, I have always felt things with an intensity which appeared abnormal in comparison to others around me.
5. The big whopper: it is "lethal" to get romantically involved with an aspie. The first thing that came to mind when I read this comment was that I'm pretty sure that it's been falsified many, many times already. But no doubt Reed and other bigots would write that off as an overly literal statement from a defective person. Even in the figurative sense, however, the claim is just laughably wrong.

Underlying all of these claims is the tired idea that autistic people can't be empathic, a flawed and prejudiced notion which is unfortunately sanctioned by reputable members of the scientific community. (Not that Reed appears to have done much actual research, aside from reading Aston perhaps.) But the article actually shows deficits in empathy on behalf of Reed and the NY Observor, who are apparently completely incapable of taking the perspective of an autistic person who might actually read this article. The article takes a particularly noxious non-autistic-person-as-default position. Apparently it's "lethal" (for a non-autistic person) to get romantically involved with an autistic person. But Reed and the NY Observor couldn't care less about the autistic's persons feelings in such a situation.

If so inclined, I might use this article as evidence that non-autistic people are incapable of empathy. After all, Reed claims to understand AS on the basis of knowing two individuals. I won't do that, however. I'll just ask readers to contact the NY Observor at editorial@observer.com . Clearly the paper is in need of some empathy and education.

Jonathan King

This is the result of segregated, "psychoeducational" schooling.

Jonathan, 13, never mentioned the stark 8-by-8 concrete-block room where he spent hours alone, locked up for misbehaving. Alpine called it the time-out room, and it offered neither distraction nor stimulation. No windows. No furniture. No bathroom. No food. No water.

This is what happens when neuro-atypical people are taught that they deserve abuse.

Jonathan’s death called attention to a little-known component of Georgia’s public school system: “psychoeducational” facilities such as Alpine that teach only students who are emotionally disturbed, autistic or so brain-injured that regular schools can’t control their behavior.

"Can't"? Or is it that public schools won't provide appropriate accommodations?

“It allows these students to be educated in their communities,” said Kim Hartsell, director of special education supports for the Georgia Department of Education. “It also is a cost-effective way of educating students with severe emotional disorders.”

This is what happens when being "cost-effective" is valued above human rights for disabled people. And Ms. Hartsell? These students are not being educated in "their" communities in the sense which you mean. "Their" wider communities are not segregated institutions which facilitate abuse.

While reading this rather upsetting article, it occurred to me that such practices would never be condoned if used on "normal" children, even if said normal children were to perform the exact same acts. "Regular" classrooms are full of individuals who disrupt classes. Yet those students are not generally subjected to this kind of abuse. This is neurotypical privilege--and the lack of it--in action.

I attended high school in a ritzy suburban school district. Most students, the privileged ones, attended one of four "regular" high schools--which were all written up by Newsweek as being among the top public high schools in America. And then there was the fifth high school, the place where the "bad" students were sent, including those with "behavioral" issues as well as many students with substance abuse problems. I didn't attend the high school for bad children. Though there were a few "incidents" in regular classrooms, I managed to avoid the Bad School by being a quiet "good girl" most of the time, and by having parents who advocated for me. I am ashamed to say that I never thought much about the implications of this segregated schooling system until reading about Jonathan. But my school, the "good," fancy suburban school, was what it was because of a system which segregated the "bad" kids. I do not know how many students with disabilities were among their number, but it seems likely that at least some were.

And this kind of indifference to the "Other" is part of how schools like the Alpine School, where Jonathan died, stay open. Privilege* can be deadly.

*I believe that a non-neurotypical person can on occasion benefit from neurotypical privilege, depending on their circumstances. Such was the case for me.

AoA's Jake Crosby: Wrong, Again

I continue to appreciate all of the supportive comments from my previous two posts. But for now, I'd like to turn to a different topic.

Jake Crosby is still perpetuating the false claim that "NDs" don't think Asperger's Syndrome is a disability. At least, this time, he's acknowledging the social model of disability, though he describes it incorrectly.

"Disadvantage" could mean unfortunate societal circumstances, like the NDs' argument that people with autism are disabled only based on their treatment from society, and that they do not have a real disability. Perhaps what they mean by "social model of disability" is that autism is disabling only because society recognizes people with autism as legally disabled.

No, this is not actually what the social model of disability means, and it seems to me as though Mr. Crosby has not done any actual research on the subject, but rather is relying on his own (largely incorrect) speculations. The social model of disability does not hold that certain conditions are disabilities because the law says so; in fact, that's completely backwards. Good disability laws rely on the social model of disability to define disability in the first place. What the social model means is that social structures and expectations create disability by denying people full access to society and by valuing certain types of minds and bodies as "non-disabled."

I'm going to paraphrase a speech by a disability activist which I once read here. We often hear the proverb, "in a kingdom of blind men, the one-eyed man is king." But this is incorrect. In a kingdom of blind men (and women!), designed by blind people, sight would not be a particularly useful thing to have. The one-eyed man would more likely be outcast as a freak than worshiped as a king. Disabilities are therefore contingent on social context.

My own experiences at Autreat confirm this analysis of the "kingdom of blind men" proverb. At Autreat, lots of people are stimmy. Sensory sensitivities are the norm rather than the exception. Social interactions based around one's special interests are typical. And of course, there is the wonderful badge system for those of us who don't know how to tell if someone wants social contact, or how to give off signals that we want social contact ourselves. This is what the social model of disability looks like in relation to autism, in practice.

If Mr. Crosby were to enter into actual conversation with evil NDs, he would find that most of us do acknowledge that AS/autism is a disability (and not just in a narrow, legalistic sense), and that we are very concerned with improving disability law and services, and in working with other disability organizations. When's the last time you saw Autism Speaks or Generation Rescue work with non-autism disability organizations? Yet ASAN does it all the time. Please, Mr. Crosby, do your homework and stop caricaturing our positions.

Having said that, I do at least appreciate Crosby's attempts to convince the anti-vaccine crowd that Asperger's Syndrome is not separate from autism, and that those with diagnoses of AS have a place within discussion of autism. I still suspect, however, that his audience will continue to consider Asperger's autism only when it suits their purposes.

Responding to the Responses

(Follow-up to my previous entry.)

Well, I've now gotten a number of comments on my last entry, both here, at Motherlode, and at Change.org. It's all a bit overwhelming. I knew that my post was going to provoke strong responses, but it's still a shock to read. It was nice to see comments from some of my regular commentators from the Hub. I also really appreciate Lisa Belkin's decision to print my words (though she shouldn't have, according to a few commentators.) To those who've just discovered my blog, welcome. I hope you stick around here, as well as other blogs on the Autism Hub.

Me being the opinionated person that I am, I have to respond to some of the negative feedback which my post received. That's what this epic of a post is for. I've loosely divided my responses into two general categories. One category is for the blatantly ableist, ad hominem responses to me. These pretty much speak for themselves in their vileness. The other category is for those responses which do not have such ad hominem attacks but still contain ideas which are, I believe, mistaken and/or incomplete. I'll address these first. All such comments will be paraphrased.

General Comments:

-People need to vent. The original author of "The Unvarnished Reality of Autism" was just expressing her feelings. You're trying to suppress her expression of her feelings.

Believe me, I understand the value of venting. Fortunately, there are numerous avenues in which people can vent without causing harm or perpetuating prejudice. Therapists' offices, for one. Personal journals, for another. Then there are also private support group settings, discussions with one's close friends, etc. If the author of the original post had expressed her feelings in such a private venue, I wouldn't have been particularly concerned with that. But the author chose to express her feelings in the public domain, at which point it becomes fair game for criticism. When she allowed her words to be widely distributed, it stopped being just about her personal feelings and started being about larger social issues regarding the representations of autism and autistic people, and the ways in which autistic people are treated in our society. It also started being about issues of privilege in terms of who gets to represent the "reality of autism" to the wider public. Bev of Asperger Square 8 explains this wonderfully.

Words have consequences. I am not trying to suppress anyone's expression of their feelings; I am merely drawing attention to the social context in which these expressions exist. Because, you see, there is a powerful cultural script about autism which constantly recounts the "nightmare" and "tragedy" of having an autistic child from the perspective of parents. This was not an isolated incident, but part of an ongoing pattern. This pattern affects autistic people in very real ways, as Amanda Baggs explains in the comments to this post. Not to mention the fact that, you know, autistic children grow up to be adults who may read things their parents wrote about them in public forums. (Yes, I know this particular author was anonymous, but this isn't always the case.)

And, I would say, the comments to the original post nicely prove my point that this rhetoric is harmful to autistic people. The mother's words were used as "evidence" to say that autistic people should be selectively aborted out of existence, autistic people ought not have children, etc.

The author may have "just" been expressing her feelings, but autistic people--who are systematically denied the right to represent the "reality of autism"--also have feelings, and are affected by the prototypical autism script which emphasizes how we make our families' lives "nightmares."

Which brings me to my next point:

-The author wasn't calling her child a nightmare, or blaming autistic people.

Well, if you want to get pedantic about it, the author was saying that living with an autistic child is a "nightmare." Which strikes me as a distinction without much difference. She was also saying that her autistic child being the way that he is directly causes depression, marriage problems, isolation, etc. That feels an awful lot like "blaming autistic people" to me. And again, I must reference Jim Sinclair and say that most autistic adults don't consider "autism" to be something which we can easily separate from ourselves. So when non-autistic people say, "it's not you, it's autism," I am very confused. Because it's not as though "autism" is a concrete entity causing there to be a fog over my brain or something. It is part of my brain, and therefore of me.

-It's the truth. Living with an autistic child is a nightmare.

I think I acknowledged the fact that parenting an autistic child is oftentimes difficult. (Though not always, as some of my commentators point out.) I'd also like to point out that parenting any child is difficult, as my own experiences watching my non-autistic sibling grow up bear out. But characterizing our existance as nightmarish is still socially irresponsible. It's also a rather "glass half empty" way of looking at the world. The author called her own representation of autism the truth, but in fact there are many truths. I know from many comments I received that not all parents of autistic children consider her words to be fairly representative of their truths. Furthermore, there is the whole issue of subjectivity and social expectations influencing our perception of "truths." I see this, for example, when the writer speaks of wanting her son to have "normal" playdates like "normal" kids.

-Relationships between parents and children shouldn't be represented as victims/tyrants.

Well, in some cases of child abuse, it is so. But I am not accusing the writer of outright child abuse, or of being a "tyrant." But power discrepancies between autistic children and neurotypically-coded parents are very real, and our society tends to privilege the later group overwhelmingly. If anything, the original writer was making herself out to be a victim...without acknowledging the very real social and practical power which she holds. I am interested in challenging that presentation of autism, but not necessarily in replacing it with another overly simplistic model.

-Why isn't it PC to admit you wish your child didn't have this disease [sic]?

First off, autism isn't a disease in the proper usage of the word. Second, I return to Jim Sinclair. Saying that you wish your child didn't "have autism" is like saying that you wish you had a different child. If it were possible to "cure" autism, someone who underwent such a cure would surely be a very, very different person.

-Why don't you show more gratitude to your parents? It must have been very difficult to raise you.

Wow. I didn't know that it was other people's business whether I showed proper gratitude to my parents or not. I don't wish to publically discuss my complex relationship with my parents, but, for the record, I am grateful to my parents for trying their best with limited information and having very different perspectives on the world. But I do not feel obliged to express those feelings to perfect strangers, nor do I hold the view that parents of autistic children are saints who can do no wrong--or if they do, that it's perfectly excusable and understandable. Because my parents, like most parents, did make some pretty colossal mistakes. And I find it extremely peculiar that someone who doesn't know me would urge me to be more grateful to my parents right after I've said that, yes, they did physically hurt me on occassion. And while I realize that this usually happened under extreme circumstances, in which I myself was violent, I still hold that my parents were wrong to react in this way, and that they ought to have done better in those situations--no matter how caring they were under relatively normal conditions. But this isn't really about me and my parents so much as it's about the tired and sometimes damaging "sainted parent of a disabled child" trope and the rather absurd expectation that disabled people "ought" to be grateful to their parents, regardless of what they actually did. The assumption seems to be that if our parents were nice enough to leave us alive, they somehow deserve our unquestioned gratitude.

-You're high-functioning. You have Asperger's, which doesn't really count.

The "functioning" language is ridiculous and insulting; see the numerous essays at Autistics.org. And, in any case, I happened to notice the fact that the autistic boy being discussed in "The Unvarnished Reality of Autism" happened to have a diagnosis of...Asperger's Syndrome. Oddly enough, no one accused his mother of falsely representing him as autistic, or of him being too "high-functioning" to really count. Yet I--having the exact same diagnosis as her son--am somehow not qualified to speak. The mind reels. Apparently Asperger's is autism only when one is talking about how terrible it is. See this venn diagram at Asperger Square 8.

Now, I'm moving on to the truly ugly and more blatantly ableist comments.

Ableism on Display:

-You're autistic and therefore narcissistic, lack empathy, and care only for yourself.

Some lovely examples of this sort of comment:

I hate to say this, and I’m sure I will receive some flak for it, but this email is from a typical Aspie.

Deny, deny, deny, me, me, me, ME! “It’s all about ME, dang it, and I don’t care about other people’s feelings or experiences in raising ME!”

It is most unfortunate that the parents who would be helped by a simple, “I’m sorry for my behavior” will never hear it. Bravo for proving this point, and for reminding us, once again, how self-focused even adult Aspies remain.

The original post was almost entirely focused on the mother's feelings--how she felt about her son being different, not his own experiences of it. Yet when I write about my feelings and experiences, I'm a self-centered aspie.

The very greatest difficulty I have in raising a child with Aspergers and in dealing with others with Aspergers is their biologically based, inalterable conviction that only their own emotions are valid and only their own feelings matter.

That the woman in the previous post has been unhappy means nothing to Sarah. Only Sarah’s feeling and the feelings of other people with Aspergers or Autism should be considered.

Where did I say that only my feelings should be considered? I simply argued that the feelings of autistics should be considered, given that they were noticably lacking in an article claiming to represent the reality of autism. I am sorry that the woman who wrote the other post is unhappy, but I am also sorry that her son has to grow up in an environment where living with him is perceived as a "nightmare." And please, if there's proof that autistics are biologically incapable of caring about others, please do show it to me, preferably without citing the rather flawed work of Simon Baron-Cohen.

I do think that autistics often come off as not caring about others to non-autistic people, because we express affection differently, and maybe sometimes because being in the world really is so overwhelming that it's hard to think about others' emotions.

Yet more evidence that those with autism are unable to empathize or relate to others emotionally. Sorry, harsh, but it’s true. As other posters have noted, in varying degrees, autistic children are biologically incapable of experiencing empathy. While normal children grow into adults, they can say, “Wow, I was a real brat, I might’ve deserved what I felt at the time was unfair.” Of course, for an autistic adult, this kind of mature perspective is largely impossible.

Ah, yes. Cast aspersions on my maturity based on conjencture about what my life and relationship with my parents is like. As it happens, I do acknowledge that I sometimes behaved badly as a child. I feel particularly remorseful about how I too often treated my sister. But why I should have to express that to strangers on the Internet, I have no idea. It's as though I'm being asked to give a public confessional for the crime of having been an autistic child, without anyone having known I was autistic until I was not a child.

-I'm going to make ableist comments about an autistic family member, and then blame "aspies" for how awful my family member is.

I am the elder sister of an 54 year old autistic woman. Though her autism is severe, my sister is very verbal. She is also amoral, totally lacking in empathy, able to form only the most shallow emotional connections with others, and prone to displaying infantile behaviors concerning bathroom issues, and when she was younger, her menstrual period, whenever she wants to punish caregivers or attract their attention.

How many of these “Aspies” would like to care for my sister? Any volunteers?

That's right. Unless an autistic person is willing to be a personal caretaker for every single other autistic person, we shouldn't talk and our family members have the right to insult us. (BTW, I do care for two autistic people--myself and my boyfriend. That is quite stressful enough!) Self-advocates like myself care very much about ensuring that autistic people receive appropriate care in non-institutional settings. We just don't think endlessly whinging about how awful autism is is a particularly effective way of accomplishing that.

-Bizarrely invoke the autistic author's college professors.

I would suggest that Sarah go back to her college professors and ask them if it is appropriate to suppress the honest experiences of a mother with autism on the theory that such writings might possibly make autistic adults appear suspect. I think they’d suggest the opposite - writing about this openly and honestly and encouraging more discussion - would be more beneficial to the parents, the child and to society.

As I said before, I'm not trying to "suppress" anything. And while I'm not sure what my professors' opinion would be on this particular essay, I'm pretty damned sure that they would not appreciate a random person on the Internet telling them what they're thinking.

-Autistic people shouldn't exist.

As someone who has been borderline Asby [sic] for a lifetime, reading accounts like the mother’s make a case for euthanasia. For the autistic adult to write in how hurt they feel: well, bugger off! Autism is hellish for everyone and parents should not expect their kid to work out well at school, schools should not be forced to accept autistic kids (who shouldn’t be there anyway) and this mother has a perfect right to tell her story, even though I cannot comprehend for one moment how she can stand to love and be around her child at all.

It was a tough competition, but I think we have a winner for the Most Ableist Comment award. (In this case, it might be internalized ableism.) I'm not going to respond to this bile in great detail, but I will say that these assinine remarks prove my point exactly. Living-with-an-autistic-child-is-a-nightmare narratives such as the original post beget ableism and inspire bigots who would advocate for our murders and exclusion from society. Thanks for making this point for me.

While I focused on negative comments in my post, as those tend to irritate me, I very much appreciate all of those parents and others who read the post with an open mind and took the piece in the spirit in which it was intended--not as a personal attack, but as an examination of the problems of certain kinds of autism narratives.