I would say that love is the extra effort you make in your dealings with people whom you do not like.
The retro-diagnosis thing is more complex than we want to admit. Some people want to state definitively that a long dead figure like Mozart had Asperger's syndrome, and that seems silly to me. Others have a lot invested in denying that someone like Albert Einstein, whose biography is well-documented and is entirely consistent with diagnosable autism, should not be claimed by autistic people as our own, either, and that seems just as silly.
When the National Portrait Gallery did the first exhibit of art by gay American artists and with subjects related to sexual difference, it was called Hide/Seek, and that is the approach those of us with autism must also take to our history: our autistic ancestors needed to hide for survival, or simply did not have a name for the difference that was them, so, in order to have a sense of our past, we need to seek them out.
We must never be shamed by our need to do this.
We should never be too definite in our claims.
It's not surprising to me that some of our gay pioneers, like Alan Turing, also had autism. Their rigidity may have prevented them from compromising into a heterosexual life, as most gay men throughout history have. Their social awkwardness may have led them to be obvious about things that others kept safely hidden. There is some talk of people on the autism spectrum also being more likely to be LGBTQ, but I'm not sure I buy it. I think it may just be harder for autistic people to hide or ignore other differences.
And all of this leads me to this question: doesn't Quentin Crisp seem autistic?
It's easier for me to pose than not.
This video is from 1971. Crisp had been living as an openly, flamboyantly gay man for forty years when it was made.
You will notice that he sounds more homophobic than anyone you would see on TV today. This is what the self-hatred of internalized bigotry sounds like. It's a sound I would like you to learn to recognize, because we all make it from time to time.
People were frequently annoyed with Crisp because, once he had found a clever thing to say he tended to say it over and over.
He lived in the same room, which he never cleaned ("the dust doesn't get worse after four years").
He lived on powdered health drink from the drugstore and the free stuff he got at parties in order to avoid the grocery store.
And does this sound a little like some of our autistic friends:
I couldn't really say that I believe in human relatonships.I know they exist. But I couldn't say that they're a thing to be sought.
And this is something I may actually start saying to people at social occasions:
I've come to the end of my personality, and now, if I want anything, it's peace.
In 1965, the year that I was born, Life Magazine published an article called "Screams, Slaps, and Love," which focused on the work on that O. Ivar Lovaas was doing at UCLA with autistic children. As Bruno Bettelheim told the popular media that the mothers of autistic children were like Nazi prison guards, Lovaas and writer Don Moser established the perception that those children themselves were monsters:
At the beginning of the UCLA tests last June, the four autistic children were assembled in a small room bare of playthings — such children do not play. Closeted in their private bedlams, they went through their endless, senseless activities. Pamela, 9, performed her macabre pantomime. and Ricky, 8, loved to flop his arms, waggle his fingers, cover his head with a blanket. Chuck, 7, would alternate his rocking with spells of sucking his thumb and whimpering. Billy. 7, like so many of the thousands of autistic children in the U.S.. would go into gigantic tantrums and fits of self-destruction, beating his head black and blue against walls.
Billy and Chuck could not talk at all. Pamela would infuriatingly parrot back everything said to her. Ricky had a photographic memory for jingles and ads which he chanted hour after hour.
It is worth going to Neurodiversity.com to see Alan Grant's scary black and white images that accompanied the article. This is how autistic children were always shown during my childhood.
From Moser's sidebar called "The Nightmare of Life with Billy," which focuses on his mother Pat's misery:
Before long, however, Pat realized that Billy was diabolically clever and hell-bent on destroying her. Whenever her husband was home, Billy was a model youngster. He knew that his father would punish him quickly and dispassionately for misbehaving. But when his father left the house, Billy would go to the window and watch until the car pulled out. As soon as it did, he was suddenly transformed. "It was like living with the devil," Pat remembers. "He'd go into my closet and tear up my evening dresses and urinate on my clothes. He'd smash furniture and' run around biting the walls until the house was destruction from one end to the other. He knew that I liked to dress him in nice clothes, so he used to rip the buttons off his shirts and used to go in his pants." When he got violent Pat punished him. But she got terribly distraught, and for Billy the pleasure of seeing her upset made any punishment worthwhile. Sometimes he attacked her with all the fury in his small body, and going for her throat with his teeth. Anything that wasn't nailed down or locked up — soap powder, breakfast food — he strewed all over the floors. Then, laughing wildly, dragged Pat to come see it.
She had to face her problem alone. It was impossible for her to keep any household help. Once Billy tripped a maid at the head of the stairs, then lay on the floor doubled up with laughter as she tumbled down. And Billy was so cunning that his father didn't know what was going on. "Pat would tell me about the things he did while I was away, but I couldn't believe her," he says.
Lovaas did some great things-- he was the first to use Applied Behavior Analysis to treat autism, and it still works more reliably than anything else.
But he was mean. The four children chosen for his first autism experiment had to be eager eaters, who he would then starve, just as his role model B.F. Skinner did with the pigeons he trained.
One of the subjects of the work that Lovaas did with George Rekers on "effeminate boys" later killed himself. His family believes that Lovaas and Rekers were to blame.
And, although he later disavowed the use of aversives, Lovaas was enthusiastic about them for much of his career. He pioneered the use of electrical shocks to treat autism:
The most drastic innovation in Lovaas' technique is punishment — instantly, immutably dished out to break down the habits of madness. His rarely used last resort is the shock room. At one point Pamela had been making progress, learning to read a little, speak a few words sensibly. But then she came to a blank wall, drifting off during lessons into her wild expressions and gesticulations. Scoldings and stern shakings did nothing. Like many autistic children, Pamela simply did not have enough anxiety to be frightened.
To give her something to be anxious about, she was taken to the shock room, where the floor is laced with metallic strips. Two electrodes were put on her bare back, and her shoes removed.
When she resumed her habit of staring at her hand, Lovaas sent a mild jolt of current through the floor into her bare feet. It was harmless but uncomfortable. With instinctive cunning, Pamela sought to mollify Lovaas with hugs. But he insisted she go on with her reading lesson She read for a while, then lapsed into a screaming fit. Lovaas; yelling "No!", turned on the current. Pamela jumped-- learned a new respect for "No."
Ruth Christ Sullivan knew that she was not a refrigerator mother. She knew that she had treated her autistic son Joe just the same way she had treated her four other children. What's more, she knew that Joe was smart and that he needed to attend school. She contacted Bernard Rimland after reading his 1964 book Infantile Autism: The Syndrome and Its Implication for a Neural Theory of Behavior, and they were both among the co-founders of the Autism Society of America in 1965.
Sullivan had to move to Huntington, West Virginia, in order to find a school that would take Joe. She is one of the reasons public schools in the United States cannot refuse students because of their disabilities:
Ruth Sullivan was one of the chief lobbyists for Public Law 94-142 (the Education of All Handicapped Children Act, now known as the Individuals with Disabilities Education Act, or IDEA), which guaranteed a public education to all children in the United States. Before the passage of the law, individual school districts in most states were allowed to choose whether they were willing to educate a child with disabilities.
She also helped to introduce Temple Grandin to the world:
I first met Temple in the mid-1980s ...[at the] annual [ASA] conference.... Standing on the periphery of the group was a tall young woman who was obviously interested in the discussions. She seemed shy and pleasant, but mostly she just listened.... I learned her name was Temple Grandin... It wasn't until later in the week that I realized she was someone with autism....I approached her and asked if she'd be willing to speak at the next year's [ASA] conference. She agreed...The next year... Temple first addressed an [ASA] audience.... people were standing at least three deep....The audience couldn't get enough of her. Here, for the first time, was someone who could tell us from her own experience what it was like to be extremely sound sensitive ("like being tied to the rail and the train's coming")... She was asked many questions: "Why does my son do so much spinning?" "Why does he hold his hands to his ears? "Why doesn't he look at me?" She spoke from her own experience, and her insight was impressive. There were tears in more than one set of eyes that day.... Temple quickly became a much sought-after speaker in the autism community.
Ruth Sullivan was an advisor on the film Rain Main and her son Joe was one of the models for Dustin Hoffman's character in the film.
You'd think Leo Kanner would be the figure in autism history I'd have the most mixed feelings about, wouldn't you? He was the first doctor to diagnose someone with autism, but he was also the author of the refrigerator mother theory, which has been remarkably destructive. And then he helped to strike one of the most important blows against that theory when he wrote the foreword for Bernard Rimland's 1964 book Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior.
But Rimland's own role in the very odd history of autism is even more complex than Kanner's.
He was autism's first parent researcher, shifting his focus after his son Mark was born. By 1964, Kanner agreed with Rimland that autism had a neurological cause, and his endorsement gave Rimland's book authority.
Rimland continued his advocacy for autistic people and their families until his death in 2006. He co-founded the Autism Society of America in 1965. He was an early and powerful advocate for Applied Behavior Analysis and against Facilitated Communication.
He was the primary technical advisor on the film Rain Man.
Unfortunately, Rimland went too far with the idea of a biological cause for autism, and spread wrong ideas that are still doing harm today. He started the Autism Research Institute in 1967. He popularized the idea that autistic children could be "recovered" through diet and vitamins. He advocated for chelation.
And many, many people have been endangered by his belief that autism is caused by mercury in vaccines.
If Hans Asperger and Leo Kanner are the first heroes of autism history, Bruno Bettelheim is among its first villains. He was one of the most popular child psychologists from the 1960s to the 1980s, and his opinions about autism were especially influential and destructive.
But the term "refrigerator mother" actually comes from Kanner, and he created the theory that autism springs from a lack of parental affection:
In his 1943 paper that first identified autism, Leo Kanner called attention to what appeared to him as a lack of warmth among the fathers and mothers of autistic children In a 1949 paper, Kanner suggested autism may be related to a "genuine lack of maternal warmth", noted that fathers rarely stepped down to indulge in children's play, and observed that children were exposed from "the beginning to parental coldness, obsessiveness, and a mechanical type of attention to material needs only.... They were left neatly in refrigerators which did not defrost. Their withdrawal seems to be an act of turning away from such a situation to seek comfort in solitude." In a 1960 interview, Kanner bluntly described parents of autistic children as "just happening to defrost enough to produce a child."
Bettelheim, however, did the most to popularize the idea that children developed autism because their parents, especially their mothers, did not show them enough love, notably in his 1967 book The Empty Fortress. In the clip above from a 1979 episode of The Dick Cavett Show, he says that parents have the same relationship to their autistic children that Nazi guards had to the prisoners in concentration camps:
In the case of these extremely disturbed children, not only nobody cared, but there was a wish that it would be much better if the child wouldn't live... This autistic child felt that everybody wants him to be dead, as the Nazis indeed wanted all the Jews to be dead...
After Bettelheim killed himself in 1990, it was discovered that he had lied about many things, including his academic credentials. Former patients accused him of abuse.
The "refrigerator mother" theory is still popular in France, as shown in the documentary The Wall.