I recently finished reading an interesting book called Boy alone: a brother's memoir. The book is about a severely autistic man, Noah Greenfeld, written by his slightly older brother, Karl. It deals with the hardships of life with the severely autistic younger brother and some of the adventures of the boy and his brother and what family life was like growing up. There is also a time magazine article that provides excerpts from the book.
Interestingly, three books have already been written about the boy by his father, Josh Greenfeld. The first of these "A child called Noah" was published in about 1970. Two sequels followed and then we no longer heard about what happened to Noah.
The Greenfeld's lived in the Pacific Palisades area of Los Angeles. I grew up in nearby Brentwood and as a teenager I frequently would spend time in the Pacific Palisades as I had a few friends there. Karl would write about anecdotes in that part of L.A. so this resonated with me as I know the areas well that Karl speaks of in the book. (a bit more about Karl's anecdotes later)
Karl Greenfeld in his follow-up repeats a lot of the same things that are in his father's books. He talks about the same hardships. The most interesting part is Noah's early experiences of being a pioneering patient of Ivar Lovaas when Lovaas' research on behavior modification (now called ABA) on autistic children was still in its early stages. He repeats the episode of Noah's food deprivation that was suggested by Lovaas in order to see if that was the "fix" that would get the nonverbal Noah to speak. It backfired with Noah upchucking bile. Karl did not mention what his father wrote in one of the previous book about Lovaas trying to talk Josh (the dad) into trying the food deprivation program again. Also, Greenfeld, sr. and Lovaas became somewhat friendly and went to see one of the famed boxing matches between Joe Frazier and Mohammed Ali. Lovaas was frank and stated that only one in 20 persons with autism make it out of their condition and that most autistics become nowhere near normal. Certainly this is a far cry from his claims in the January 1974 issue of psychology today where he claimed that he could make autistic kids very nearly normal as well as in the famed 1987 study where nearly half of the children in the experimental group were allegedly cured of their autism. Also in those days, in addition to food deprivation, Lovaas used harsh aversives such as spanking and electric shocks. He stated that the operant condition was based on fear and that he did not think Noah was afraid of anything or he would use "his stinger" on Noah the following day. Noah apparently was hit but not shocked.
By the time Noah is 5 or 6 years old he is no longer a client of Lovaas. Lovaas now states that he has done all he can for Noah and that he is concentrating his research work on younger children. Noah still smears feces, scratches when approached and is completely nonverbal. Karl describes him as one of the children who "flunked Lovaas" which was a popular term among some parents of autistic children. Karl gives Jon Shestack and Portia Iverson's son, Dov, as another example of someone who flunked Lovaas.
Noah's story does not get any better, Noah gets older, harder to deal with and the family has to contemplate institutionalization for him. Josh Greenfeld wonders why more money can't go into figuring out what the hell is wrong with Noah. Noah certainly becomes another example of an autistic disenfranchised by the neurodiversitites many of whom have asperger's. Later, not knowing where he can go Noah is sent to a placed called the behavior modification institute. In Josh Greenfeld's last book the place is called the operant conditioning center. In this place Noah is spanked, scratched and abused and then finally his parents take him out of the place.
There is little doubt that the names operant conditioning center and behavior modification institute are pseudonyms for the behavior research institute which would later be named the Judge Rottenberg Center, which to this day draws controversy for its very harsh methods of shocks and spankings for dealing with autistic children. Its director Matthew Israel has never submitted his methods to any form of peer review and in one piece that I read in JADD it stated that he was expelled from the autism society of America for practicing clinical psychology without a license. The Behavior Research Institute left California in the early 1990s at about the same time the Hughes act, which outlawed aversives in California, was enacted.
After leaving the behavior modification institute, Noah is institutionalized in the Fairview Mental Hospital in nearby Orange County, California. He spends many years there, still unable to speak or toilet himself. Eventually the Greenfeld's buy a house where Noah can live and hire a succession of caretakers, most of whom don't work out and one who even bites Noah and probably sexually assaults him. Karl also believes that in one residence where Noah lived he was sexually assaulted by a higher functioning autist.
The book also details Karl's teenage adventures in the Pacific Palisades which I discussed above and talks about his chronic drug abuse and his eventually ending up in rehab. I won't go into the rest of the book as it might spoil it for anyone who might be interested in reading it.
I enjoyed all three Noah books and the fourth one published by the son. After the first three had been published, I wondered if an autism book like this one could be published Nowadays. Attitudes towards autism have changed and we now realize the disorder exists in many more persons of normal intelligence than we realize. On one side we have the success stories of autistic children who recovered such as Christina Adams' memoir, a real boy and Catherine Maurice's story Let me hear your voice. On the other side, we have the books written by and about High functioning autistics claiming that autism is some sort of gift or the next step in evolution. I was rather surprised that Karl's book could be published given these circumstances of the drive for only feel good autism books and none of the harsh realities that some persons with autism must face.
One wonders about Noah's flunking Lovaas. Was he in the 1987 study? If yes, was he in the experimental or lower treatment control group? Lovaas carried out his study between the years 1970 and 1987 so it is possible that Noah was one of the first subjects. Assignment of persons to the experimental and control groups in Lovaas (1987) was a function of therapist availability. Persons living near to UCLA had more therapists available and received the 40 hours per week of therapy. Those in the control group lived far away from UCLA so there was not the same therapist availability. They only received 10 hours a week of ABA and not 40 hours a week of ABA. Lovaas claimed that his original intent was to assign persons to experimental groups and control groups randomly. He was not able to do this because of parent protests. There was a high ratio of males to females in the experimental group. The ratio of boys to girls was about even in the control group. Noah lived in the Pacific Palisades, approximately 7 or 8 miles from UCLA. He was also a male. So if he were a part of Lovaas 1987 it would be much more likely that he would have been in the experimental group. If he was not a Lovaas subject as part of the 1987 study in 1970 when he first started Lovaas at about the age of 4, what other studies was Lovaas doing that included Noah and why wasn't Noah included in the 1987 study?
These questions are interesting in light of the fact that though Lovaas received money from the NIMH to study the adult outcomes of his 1987 study's research subject he has not published them in the literature. We don't know how the supposedly cured half of the experimental group fared as adults (they are now in their late 30s and early 40s as is Noah).
This also rings true in the published memoirs of parents such as Adams and Maurice. We don't know how they fared or will fare as adults. The oldest person that I know of who underwent Lovaas treatment who had a positive write-up was Drew Crowder who is mentioned in the book autism from triumph to tragedy. He was 18 at the time and doing well in college and he wrote a short piece at the end of his mother's book. In addition to Lovaas' neglect to publish his adult outcomes we don't see any parents or persons with autism publishing memoirs stating how much ABA helped them become functioning adults.
Is Noah (who flunked Lovaas) who lived in institutions most of his adult life and now lives in a supervised home, unable to speak or toilet himself a typical example of a Lovaas adult outcome. I wonder.