A Rose Garden of Ignorance

Before the current autism spectrum categories existed, some children who would today be classified as autistic were diagnosed as having "childhood schizophrenia." They were believed to inhabit a seductive world of hallucinations from which they could be coaxed back to reality through a lengthy course of psychoanalysis.

I remember being given a Rorschach inkblot test as a child, when I was young enough to be unaware of its ominous significance. (Thankfully, I wasn't packed off to an institution afterward, as some children of my generation were.) At the time, I just thought it was one of those picture puzzles with hidden shapes, like in an activity book for children.

I often bought paperback books at school, when they handed out those Scholastic Books fliers for kids to order from. One book that I bought, which was a bestseller in the 1970s, was called I Never Promised You a Rose Garden. It was a novel about a teenager who had been diagnosed with "childhood schizophrenia."

The book begins with the main character, Deborah, being taken by her loving parents to a mental hospital where she will be cured of her terrible illness by the efforts of a brilliant, insightful, and hardworking psychiatrist. Deborah doesn't seem to notice the change in her surroundings much, as she spends most of her time hallucinating a vividly detailed assortment of godlike characters and fanciful landscapes.

Well, except when she starts cutting herself. Could Deborah's self-injury have anything to do with the trauma of being separated from her home and family? Not according to the author, who blithely explains that one of Deborah's imaginary characters told her (for no apparent reason) to do it.

Just about everything Deborah does, throughout the entire book, is described as a consequence of her hallucinations, until at the end the heroic psychiatrist convinces her to choose sanity. Whenever Deborah gets upset about anything, it's because her unconscious mind is full of fear and anger, personified by the hallucinations. If she has any problems speaking—ditto. There's an explanation and a miraculous psychoanalytical cure for everything.

It's a neat little non-falsifiable paradigm with impeccable internal logic and no basis whatsoever in reality.

Hard to believe that large numbers of medical professionals and other well-educated folks actually thought that stuff made sense, isn't it?

Well, actually, considering all the ignorant crap that's being said about autistics today—no, it isn't.

The Best of Times, The Worst of Times

I finished reading Unstrange Minds about three weeks ago, but I've only just now gotten around to writing a review of the book, in part because it took me some time to ponder the contradictions.

I'm not referring to factual contradictions. All of the historical and cultural information is meticulously researched, and its logical presentation supports Professor Grinker's conclusion that the recent increase in autism prevalence is due to a broader application of the diagnostic label, rather than an actual increase in the number of people with autistic traits.

When it comes to the personal views Grinker expresses, however, the book is a turbulent microcosm of society's ambivalent and conflicting attitudes toward the autistic population. In the introduction, Grinker frames the discussion in these paradoxical terms (p. 6):


"Autism is a terrible, lifelong disorder, but it's a better time than ever to be autistic."


As Grinker sees it, this is the best of times because our society has more understanding of neurological differences than ever before. Far more children are being identified as autistic, often at younger ages; and more services, special education classes, and vocational training programs are available for these children. Their parents are no longer being blamed by psychoanalysts for causing their autism by being neglectful or aloof. Most of the abusive institutions that once existed have been replaced by modern group homes. Better medications are available, and governments and nonprofit organizations are providing much more funding for research to improve our scientific knowledge about autism.

I'll acknowledge that these points are all true, in and of themselves. However, in the context of the prevailing cultural attitude that "autism is a terrible, lifelong disorder," one could also argue that it is the worst of times to be autistic. This is how I see it:

Far more children are now victims of society's prejudices against autism than ever before, taught from earliest childhood to think of themselves as disordered and defective. Their parents often are driven to panic and despair by a widespread mass hysteria that declares their very existence to be a devastating tragedy. They may be placed in unsuitable special education programs that do not meet their needs, and they may be given only the most basic vocational training. Although many institutions have been shut down, some still exist, and a group home can be just as isolating for residents who may be shunned or taunted when they venture outside.

The myth of Refrigerator Mother has been replaced by other myths that are equally damaging to families, such as the urban legend about vaccines causing autism, which has spawned an entire industry of conscienceless quacks who prey on parents by convincing them that they must immediately buy all sorts of bogus treatments to save their child from a terrible fate. Behaviorists also put enormous pressure on parents to go into debt to pay for intensive therapies that are touted as vital for "early intervention," although the science isn't there to support those claims. Although psychiatric medications have been improved in recent years, they also have been prescribed much more broadly and indiscriminately to autistic children who may not need them and who may not be able to tell anyone about painful or distressing side effects. And yes, there is more autism research these days, but much of it consists of eugenics research to develop a prenatal test.

I'm not sure if Grinker made a conscious choice to gloss over these controversial topics to avoid alienating potential buyers of his book or if he just hasn't given some of them much thought.

As a cultural anthropologist, Grinker is well aware that disorders are socially constructed. Indeed, the book explicitly states as much in several places, including this passage (p. 11):


"...autism, like all disorders, does not exist outside of culture. It is culture that sees something as abnormal or wrong, names it, and does something about it..."


Grinker gives us many interesting glimpses into different cultural constructions of autism, from a South African tribal culture where autistic children often are thought to be cursed and are taken to witch doctors, to the status-conscious Korean cities where children with developmental disabilities are largely ignored, to the families in India who prefer a diagnosis of mental retardation because there is so much stigma and ignorance surrounding autism.

But when he describes his life with his autistic daughter, Isabel, it's not at all clear that Grinker understands the extent to which his own attitudes have been shaped by our society's prejudices. Clearly he is a loving father who dotes on Isabel, even taking her to visit France when she develops a strong interest in Monet's garden. However, he seems to assume without question that Isabel will never leave home or marry (p. 24) even though he proudly describes her school successes, her extensive knowledge of wildlife, and her ambition to become a zookeeper (p. 300).

As mentioned by Autism Diva in a recent post, Grinker already has acknowledged that he erred in failing to interview autistic adults when he researched the book, so I won't belabor that point. It appears that, after the book went to press, Grinker became more aware of autistic self-advocacy and the extent to which his culturally-based assumptions about autistic people might be in need of some adjustment.

It just goes to show that none of us, however well educated, can step outside the constraints of our own cultural assumptions and analyze them objectively, no matter how much we believe we can.

If you've bought Unstrange Minds, or are about to buy it (and it's a good read, especially for those who are interested in history and the social sciences), I suggest that you buckle up your mental seat belt. You're in for a bumpy but fascinating ride.

The Buzzing

In a comment on my last post, Chasmatazz wrote about the self-doubt and despair often found in today's autistic youth:


I attend an autism support group, and I see this all the time among the younger set. They use medicalized terms, and lament their sorry state of affairs.

How can we reach the younger autistics?


At various times in history, civil rights activists have had to deal with similar issues. Feminists often found themselves unable to convince other women that they were deserving of property rights, the vote, and equal employment opportunity. Gay rights activists struggled to persuade their closeted brethren that they were not evil or mentally ill and had no reason to be ashamed. Black activists worked to bring hope to many people who had spent their lives in the most appalling poverty and degradation, never expecting to see anything better.

There's a stark description of these feelings of worthlessness in the book The Autobiography of Miss Jane Pittman, which is actually a historical novel and not an autobiography. The main character, an elderly black woman, explains why a young civil rights activist named Jimmy has been finding it so hard to persuade others to join his cause:


You talk of freedom, Jimmy. Freedom here is able to make a little living and have the white folks think you good. Black curtains hang at their windows, Jimmy: black quilts cover their body at night: a black veil cover their eyes, Jimmy; and the buzzing, buzzing, buzzing in their ears keep them from 'ciphering what you got to say...

...they don't understand nothing you telling them. You see, Jimmy, they want you to cure the ache, but they want you to do it and don't give them pain. And the worse pain, Jimmy, you can inflict is what you doing now—that's trying to make them see they good as the other man. You see, Jimmy, they been told from the cradle they wasn't—that they wasn't much better than the mule.


For autistic youths who grew up hearing that they were sick and defective, the buzzing pervades every aspect of their existence. Even their most personal thoughts are not their own, but are disordered manifestations of a malfunctioning brain. Every idle activity is a stim, while every productive interest is an obsession. Any natural talent is a splinter skill or a symptom, and any area of weakness is evidence of an overall lack of ability. Conversations can't just be exchanges of information but, instead, are verbal minefields where speech and social skills are constantly tested and found wanting. Even the simplest of hopes—a meaningful job, a home of one's own, someone to love—are met with pity and a patronizing insistence that these things are impossible. Having a crisis of the soul? Better go take some meds...

Our young people's inner selves are dying slow, silent, ignominious deaths, with no news cameras to bear witness to the destruction of their dignity and their dreams. They have no protest songs, no chanting crowds of demonstrators, no voices loud enough to be heard over the buzzing.

How can we reach them? Not with words alone, but by transforming the world around them, as other civil rights movements have shown. Change the social environment to one that is more respectful and offers more opportunities, and those who have despaired will begin to feel hope.

Sports, Prejudice, and Journalism

There's a post on Autism Vox about a television interview in which Jason McElwain, the autistic kid who got some undeserved fame last year for shooting a few baskets in a high school game, described himself as a hero. (NBC, natch. Hurry up and clean out your desk, Bob.)

At the end of the post, Kristina had this to say:


"Autistic Boy Drops 20 Points" the headlines read a year ago about J-Mac.

Have you heard any headlines saying "Mentally Retarded Student Drops 20 Points" or even "Schizophrenic Athlete Drops 20 Points"?

I hope we hear all of those, someday.


I'm sure I can't be the only one who winced upon reading that (and the original news coverage). Here's what it reminds me of: Old newspaper stories from about 50 years ago, when professional sports in the United States were starting to become racially integrated, with headlines like "Negro Hits Home Run."

Nowadays, under modern journalistic codes of ethics, news stories typically do not mention a person's race unless it is relevant to the story. Publishers understand that gratuitous discussion of race, national origin, and other divisive social categories is best avoided because it highlights differences and therefore tends to perpetuate prejudice. It's about time for the media to start showing the same respect toward neurological minority groups.

As for Jason McElwain and his misguided belief that he is a hero for raising awareness of "the disease" of autism—well, he's a clueless kid, and I'm sure he was only repeating what he was told by manipulative curebies who want to use him to further their agenda. Because he clearly doesn't know any better, I won't bash him. I do, however, have a bit of advice for him:

You think you're a hero, Jason? It might be a good idea to do some reading about Jackie Robinson and all that he endured—with great dignity—in integrating major league baseball. Dude, you're no Jackie Robinson.

Joy Is Only the Beginning

Parents who oppose the practice of routinely aborting children with disabilities often write or speak about how much joy their child has brought into their lives. It's a point that needs to be made, in the face of a relentless onslaught of pro-eugenics propaganda that describes the very existence of certain kinds of people as devastating and tragic, but sometimes I wonder if we might be playing into the enemy's hands by putting too much emphasis on it.

One of the underlying assumptions of modern-day eugenics is that children are equivalent to consumer goods. Like a new car or a stereo system, a child is valuable only to the extent that he or she provides enjoyment to the family. Children are looked upon as accessories to their parents' lifestyle. In this social climate, when we argue that children can bring joy to their parents even when they have neurological or other differences, we are allowing the enemy to frame the parameters of the debate. The value of a child's existence should not be defined in terms of consumer satisfaction.

It's only a short way down the slippery slope from finding joy in spite of perceived misfortune, to platitudes about cherishing the lovely landscape of a metaphorical Holland to which certain families are banished, to Peter Singer and Precious Ashley. Children who fall into the many categories targeted by the eugenicists can be reduced to little more than stuffed animals (as a recent post on the MomSquawk blog put it) who are magnanimously allowed to be decorations in their parents' homes, if they're allowed to live at all.

In his book The Road Less Traveled, psychoanalyst M. Scott Peck described how love differs from narcissism in a chapter entitled "Love Is Separateness." Although the following excerpt deals with marital relationships, not parenting, I believe that the point is equally applicable in both contexts.


Not too long ago in a couples group I heard one of the members state that the "purpose and function" of his wife was to keep their house neat and him well fed. I was aghast at what seemed to me his painfully blatant male chauvinism. I thought I might demonstrate this to him by asking the other members of the group to state how they perceived the purpose and function of their spouses. To my horror the six others, male and female alike, gave very similar answers. All of them defined the purpose and function of their husbands or wives in reference to themselves; all of them failed to perceive that their mates might have an existence basically separate from their own or any kind of destiny apart from their marriage. "Good grief," I exclaimed, "it's no wonder that you are all having difficulties in your marriages, and you'll continue to have difficulties until you come to recognize that each of you has your own separate destiny to fulfill." The group felt not only chastised but profoundly confused by my pronouncement. Somewhat belligerently they asked me to define the purpose and function of my wife. "The purpose and function of Lily," I responded, "is to grow to be the most of which she is capable, not for my benefit but for her own and to the glory of God." The concept remained alien to them for some time, however.


I'll acknowledge that parents are not necessarily being selfish when they worry that they might not be able to deal with raising a special-needs child. Fear of the unknown is the main issue there. But as to that fear, I'll say this: Children are always different from their parents and from one another in a great many ways, and each child is uncharted territory. No one ever knows how well they can deal with parenting any child. It's always a matter of gaining experience on the job, observing how the child grows and learns, and loving the child enough to let the natural process of growth take place, unconstrained by the parents' needs and assumptions.

Cognitive Dissonance

In response to a post about employment discrimination, James, a behavior analyst, made the following comment:


There is a sense of cognitive dissonance... If the employee was "exemplary" up to this point and all of a sudden they are deemed "unemployable," wouldn't that be illegal and unethical?


Cognitive dissonance, a concept developed by social psychologist Leon Festinger in the 1950s, refers to the mental discomfort that people experience when trying to hold two or more contradictory beliefs at the same time. They may deal with this discomfort by changing at least one of their inconsistent beliefs or by forming a new belief to explain away the contradiction.

It could be argued that prejudice is a form of cognitive dissonance because people who hold bigoted views often must deal with evidence that doesn't match those views. In the context of employment discrimination, however, I think the dynamics are somewhat different.

There are several ways in which an exemplary employee can fall victim to discrimination in the workplace without any cognitive dissonance being involved. Probably the most common way in which it happens is a change in management. The employee is hired by an unprejudiced manager and does well in that manager's department for many years. Then the employee gets a new boss who is prejudiced, doesn't know anything about the employee's past performance, and doesn't bother to look into it.

Another way in which discrimination can affect an exemplary employee is when a manager assumes, based on factors such as age or disability, that the employee's performance is likely to decline in the future. The employee's excellent record is irrelevant to this sort of prejudice because it is based on the stereotype that older and disabled employees, even if they once were good workers, are becoming less productive as time passes.

Because of the large global labor surplus, many managers also hold the view that employees are easily interchangeable. From this perspective, even if an employee has an excellent record, replacing him or her is no big deal. Companies with this sort of attitude see no downside to terminating employees who belong to an unpopular minority group, as long as the managers think they can do it without getting sued. For example, in jurisdictions where the employment discrimination laws do not cover sexual orientation, some companies have had inquisitions where they interrogated their workers en masse about their sexual preference and fired anyone who refused to answer. After all, there's always someone else in need of a job...

So I don't see much cognitive dissonance when it comes to employment discrimination. Sadly, there seems to be much more of it in parents' attitudes toward their autistic children. Like other parents, they see themselves as loving and caring people who adore their kids and want the best for their family. But at the same time, many strident voices in society are exhorting them to fear, loathe, and pity autistics. The emotional conflict in holding both of these views at once is, to use an all-too-familiar term, "devastating."

Some parents react by denying the possibility that their child could be autistic. They convince themselves that the doctors, teachers, or other professionals who recommended an evaluation had no idea what they were talking about. Any evidence to the contrary is explained away somehow, no matter how difficult it may be to rationalize.

Other parents accept the reality of their child's autism but seek to reconcile their conflicting views by insisting that it is not a permanent condition. They engage in magical thinking, such as believing that the latest fad diet or alternative treatment will make the autism disappear. Because they don't see their child as permanently autistic, they avoid having to consider the impact of their prejudices on their child.

In some tragic cases, parents who held these conflicting beliefs persuaded themselves (or were persuaded by others similarly inclined) that murdering their child was an act of love.

It doesn't have to be this way. Parents can free themselves from the cognitive dissonance trap by choosing to examine and reject society's ugly stereotypes about autistic people; but, as we know from other civil rights movements, it takes a great deal of time, effort, and mental toughness to challenge widespread prejudices.

Hasta La Vista, Bobby

It's time to bring out my trusty old curebie tombstone, now that Bob Wright has been axed from NBC for, among other things, his gross abuse of his corporate position in promoting Autism Speaks. (Many thanks to Autism Diva for posting a link to this story.)





Under the circumstances, instead of composing a formal eulogy for his career, I'm just gonna crank up the volume on the party music. Because Wright and his cronies put so much time and effort into portraying autistics as monsters, my retirement gift to him is a personalized version of the "Monster Mash."


Based on the Halloween oldies song "Monster Mash" by Bobby "Boris" Pickett and the Cryptkickers:


Bob Wright was working late at NBC one night
When curebie horror stories gave him quite a fright
Visions of changelings appeared before his eyes
And suddenly, to everyone's surprise

He smoked some hash
(Well, maybe not, but he had a sanity crash)
And raised some cash
By treating autistic kids like trash
He got quite brash
Spread mass hysteria in a flash
Autism Speaks did the mash
(Ugh, pass me some of that hash...)

From the eugenics labs and the behaviorist lairs
To the woo-woo conventions where the quacks hawk their wares
The ghouls all came with their nightmarish dreams
To get some funds for their hideous schemes

They got their cash
Doing the Autism Speaks mash
They made a big splash
Plenty of autistics to bash
Little kids to smash
Off to the bank to dash
Ethical clash?
Nah—they never had any ethics, natch

The autie-haters were having fun
Their party had just begun
The guests included Lauren Thierry and crew
And a child murderer or two

They had lots of use for a TV CEO
From "The Apprentice" to the "Today Show"
All that free publicity, every chance Bob got
None of it ever had to be bought

It was a clash
Of loyalties—so brash
Ethics in the trash
Might as well have stolen cash
From NBC's stash
Autism Speaks did the mash
Bob thought it was a smash
But then, the inevitable crash

In GE-land, Jeffrey Immelt stewed
Seems he didn't care for Bob's attitude
He called Bob on the carpet and shook a fist
And said "What's with this conflict of interest?"

He had panache
He sacked Bob in a flash
And saved some cash
By putting Bob out with the trash
Just one more job to slash
How the mighty can crash
All in a flash
Bob's as unpopular as a rash

Now everything's cool, Bob's off to his rocking chair
And autistics have a hope of someday being treated fair
This is how we celebrated when we got the news
We cranked up the music and put on our dancing shoes

We did the mash
At Bob's retirement bash
The Ding-Dong-He's-Dead mash
It was a graveyard smash
No more teeth to gnash
It caught on in a flash
Oh, what a splash
Come on and do the mash

Life Is Suffering

This is the first truth of Buddhism.

Many people nowadays, living a pampered existence in our wealthy consumer society, seem to have forgotten what our ancestors knew—that we grow and evolve by dealing with adversity, not by avoiding it. We gain strength and wisdom when we confront our difficulties and find ways to learn and benefit from them.

In an age when our everyday activities include browsing among millions of products in shopping malls and on the Internet, it's tempting to think that we can just do the same with the diversity of the human species—pick and choose a few glittering gift-wrapped popular packages, while leaving all the problems and challenges and unfashionable styles on the shelf.

The seductive promise of avoiding suffering is the false foundation on which modern-day eugenics rests. When the Down Syndrome prenatal test first came into use, parents were advised that terminating the pregnancy was the most compassionate choice because DS babies often were born with defects of the heart and other organs and would have a short and painful life. Although today's advanced surgical techniques have made it possible to repair most such defects at birth or shortly thereafter, the medical profession simply takes it for granted that being born with DS equates to preventable suffering. Doctors and genetic counselors never bothered to ask people with DS for their opinion.

We're now living in a world where hundreds of prenatal screening tests are being used for eugenic abortion purposes, and all of them are based on the premise that suffering should be prevented by eliminating genetic differences. The idea seems to be that by declaring a large percentage of the human species eugenically unfit to live, we'll end up with a race of perfect children who never suffer and never cause their parents any difficulties.

Of course, perfection in this context is a moving target. The Down Syndrome population has largely disappeared because of prenatal screening, but the psychologists have constructed new "disorders" such as autism and ADD/ADHD. I don't mean to suggest that these conditions are not real—the labels do indeed refer to identifiable clusters of behavioral traits—but in the past, they weren't pathologized to the extent they are today, and many of the children who are now labeled as "disordered" had ancestors with similar traits who were seen as quirky but normal.

As Dr. Seuss eloquently illustrated in his classic fable of the Star-Bellied Sneetches, any arbitrarily chosen trait can end up being seen as essential to proper social functioning, and the favored traits can change rapidly because society is so fickle.

To put it another way, everybody suffers, not just those who are described as "sufferers." All human beings have their own individual challenges to deal with, as well as their particular strengths, and almost any characteristic can be either a strength or a weakness in different environments. If we aborted every fetus that was ever going to suffer, the human species would promptly become extinct.

Who Speaks for the Children?

Occasionally, parents who feel uncomfortable with autistic self-advocacy will say something like this: "Well, it's fine that all you autistic bloggers can speak for yourselves, but don't try to tell me that I can't speak for my child. You don't know my child. Unlike you, he has a lot of problems, and he'll never be able to take care of himself or do the things you do."

That's a very emotional argument, but as far as I know, there aren't any autistic bloggers claiming that parents should never speak for their children. I don't think there ever were. It's just a big old scary straw man.

Of course parents are the best advocates for their young child, autistic or otherwise. They are the most intimately familiar with the child's day-to-day experiences and needs. I'd like to see the parents in the autism community become much more willing to trust their knowledge and instincts and feel much more empowered to speak up in defense of their child's dignity and personhood, instead of being intimidated into silence by self-proclaimed experts. As most of us know, there are some seriously ignorant professionals making unfounded gloom-and-doom predictions about autistic kids. Who should be speaking for these kids? Not the prejudiced so-called experts who have no clue about autistic children's abilities and potential, and not the pity-mongering nonprofit organizations that have been using images of devastation and epidemic as a fundraising tactic—but informed, caring parents.

One of the ways that parents can become more informed is to read blogs and other websites by autistic adults. Not because we know more about a particular child than his or her parents—we don't—but because our experiences can provide more background and insight to help parents gain a broader perspective.

It's all too easy to make limiting assumptions without being aware of it. Let's imagine a society where almost all parents were firmly convinced that at least one of their children would never be able to hold a job or to live independently. Does that sound like an unlikely hypothetical future? Well, actually, it isn't. I'm describing the not-so-ancient history of almost every society on Earth. The children who were thought to be destined for a lifetime of total dependency were females.

Those who spoke out against such attitudes (feminists) were ridiculed and dismissed as mentally incapable of understanding their situation—sometimes by their own parents.

Most of the parents who held those beliefs meant well and had their daughters' best interests at heart; it just never occurred to them to question their cultural assumptions.