Applied Behavior Analysis
Ariane Zurcher asks why we do not use Applied Behavior Analysis with neurotypical children:
This is where the ethical question must be considered. This is where the “science” behind the use of ABA begins to fray. If we really believe Autistic people (and children) deserve the same respect, are truly considered equal as those in the neurotypical population, ABA presents some real problems. ABA can only really work if we view autism as a deficit and something that must be removed. Only Autism is a complex neurological difference that cannot be removed. I do not believe for a moment that there will ever be a “cure” for Autism. It was explained to me by a neurologist that Autism is a web of neural pathways branching off and fusing producing new neural pathways, so random, so complex making it impossible to single out any one pathway allowing for a simple removal to produce a neurotypical person.
Several changes were made to the show and to the theater to facilitate this event. There were volunteers at the front of the house with green glow lights that they would hold up to warn sensitive audience members that a loud noise (or perhaps a round of applause) was about to happen so that they might not be surprised and could cover their ears. No strobe effects were used in the show. Most of the loudest audio effects were taken out of the show completely.
The volunteers placed themselves throughout the theater. As the show began, the house lights dimmed only about halfway, where they would remain throughout the show.
This was all completely acceptable. No one was going to shoot a dirty look behind them at some disturbance. No one was going to lean over and shush someone down the row. There would be no ushers summoned to walk down and act as a policing force. Today we celebrated the noises, the restlessness, the different behaviors. These reactions were accepted as high praise - a form of applause. Today was a day for these wonderful people to enjoy our show without worrying about disturbing anyone else.
Some wonderful autistic desires from Yes, That Too:
I want every person who has found a way to communicate to get the deciding say in their own life and care, and I want finding a way to communicate, standard or not, to be a top priority for whoever is helping those who have not yet found a way. I want people to be listened to about their own lives. I want people in charge of their own lives. I want people to realize that autistic people and other people with disabilities are not eternal children, and that trying to keep us so is harmful for everyone involved.
I want people to not fear autistic people.
Dilshad Ali sees her son, lying on the floor to avoid things, as the Gandhi of Autism:
Often there is an antecedent to him dropping to the floor – he has to get ready for school, he has to do work at school, he is denied taking a shower for the umpteenth time, he is asked to come inside the grocery story with me while I buy bananas, he is asked to sit at the dinner table for supper, he is asked to sit at his desk at school to do some work. Sometimes it’s a “boy discovering himself” thing. (You know, lying down, hand goes in the pants, enough said.)
And, often there is no antecedent (which leads to me to question the medical/health stuff).
Still, all the times that he planks (because it’s hipper to say plank than drop) because he was asked to do something – well I have to hand it to the boy. He has embraced the age-old, most nonviolent form of noncompliance. Gandhi could take lessons from this kid in his noncompliance. All 87 pounds of his body drops to the floor, and there is No. Getting. Him. Up. Grown men (twice and three times his size) at his school struggle to physically prompt him up. It takes at least two people doing a special lift to hoist him up.
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."
A federal judge delivered a huge victory to military families with autistic children when he ordered the Department of Defense to immediately begin paying for Applied Behavior Analysis:
Judge Reggie Walton today ruled that the Department of Defense and its military insurance arm, Tri-Care acted arbitrarily and capriciously in denying applied behavior analysis therapy to military dependents with autism spectrum disorder. The ruling was issued in the case of Berge v United States, No. 10-0373. This ruling capped the military families' three year battle with the Department of Defense and TriCare. The Court granted Summary Judgment to the families, ordering that the government cover ABA therapy for thousands of autistic children of military dependents. The government had taken the position that the therapy was "unproven." Judge Reggie Walton held that this conclusion was arbitrary and capricious and ordered the government to provide the therapy immediately. The 67 page ruling is expected to benefit 20,000 children with autism spectrum disorder.
New IACC member John Elder Robsion writes about an issue he brought up at yesterday's meeting: in many cases ABA is the only therapy that insurance companies will pay for, but it may not be the best option for every child:
I’ve written about new therapies on this blog, and indeed many show great promise. Their effectiveness has been shown in many studies, yet they are not widely available, and rarely covered by insurance. Why? Because there is no way for an insurer to know that the intervention being delivered in North Dakota is the one designed and vetted at UCLA (for example).University research centers develop these therapies and even do training to propagate them in the field. Important as those efforts are, they cannot roll out a new intervention on a national scale to augment ABA. It’s just not realistic for any single group to undertake that except over a period of decades, which we do not have.So what do we do about this?
I think we need Federal action that mandates insurance coverage for a much wider array of behavioral intervention. Valuable as ABA is, is it not a path that works for every kid, and frankly, it is “old news.” We need to get our insurers covering the deployment of new therapies that will help a broader range of kids.