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 tragedy to triumph. 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.
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So,is this a pro-ABA or an anti-ABA post?
Do you think ABA/Lovass failed Noah Greenfield because he didn't spend enough time in it ?Do you think ABA would have helped you as a child were it available to you?
I am about the same age as Noah, hard to believe,as he looks at least twenty years older than I do ,if not more.
I don't know how you managed it,but most children with autism,who were at all verbal were diagnosed as schizophrenic,with a long train of comorbidites attached to it.This really didn't change until the DSM-III came out.I had to dig up old childhood records,and get properly rediagnosed as an adult, and not with Asperger's but with atypical autism.So I never had ABA either.
I still don't really have an opinion on ABA.There are those like Harold Doherty who swear by it,and those like Michelle Dawson who bash it,while promoting alternative methods that have not been peer reviewed.
Is ABA more successful today than it was in the 60s and 70s,because it is a different type of ABA,or is it because ABA is now given to children all over the spectrum,not just the lower-functioning types that it was given to in the bad old days?
I would like to see some comparitive data on this.
My 12-year old daughter is non-verbal and non-toilet trained, and has received ABA. Has ABA been s complete fallure? No, it helped to bring her into this world. It has also helped her to learn.
It is not right to link the abuses of the past to today's ABA programs. At he same time the 50% cure statistic should no longer be used.
The way I see it, the chances of ABA recovering a child is no better than 1 in 5, and probably worse. However it is the best chance they have.
Roger: I doubt that ABA is more successful now than it was at one point in time. The only difference now is that there is increased awareness that persons with normal intelligence can be diagnosed with autism that we really did not have in the 1960s and the 1970s, so the kids receiving it now are probably higher functioning anyhow, so it would appear that ABA is better now than it was then but this is really an illusion.
Mayfly: You can't really shed the aversives and say because they are not used anymore in california or other places because if you read Lovaas (1987) it was aversives that were the ingredient that was used in the experimental group of children that was the main factor in their recovery according to Lovaas' old research. There is no empirical evidence of such recovery without aversives. So ABA used without aversives used based on Lovaas (1987) when parents sue school districts and use this study as evidence, it is really false advertising.
Lovaas has claimed that he developed new techniques where he could get the same results without aversives in an essay he wrote rebutting his various detractors, but he has never published such a report or presented it to any kind of peer review. Therefore, there is no empirical evidence that ABA without aversives is really helpful to anyone.
The name of the book is "From Tragedy to Triumph" and not the other way around.
The aversives used nowadays are the deprivation of the reward (if the child fails the trial), a disproving statement from the therapist (also, on failure) or impossibility to escape from the therapy (as children usually do when they start ABA; they are simply put back on the chair, over and over again - and rewarded for good behavior).
This is far away from the harsh aversives used in the early days of ABA - whose usage I believe it is overstated by people opposing ABA.
The 47% rate of recovery did not reproduce and no parent should expect that. A recent study cited by Harold L. Doherty points to a 10-20% recovery rate. I'd rather say 10% is more realistic.
For accounts of success stories without aversives, you cited Let Me Hear Your Voice by Catherine Maurice. See also Overcoming Autism by Dr. Koegel, a respected name in the field and the author of the PRT method (a behavioral method not based on discrete trial). If you read the book of Dr. Koegel, which is not as triumphalistic as Let Me Hear Your Voice, you'll see how difficult and convoluted the road to recovery is.
The boy in that book, Mathew, recovered completely at age 11 - much later that the 7 years threshold that some assert. And he still had negligible autistic traits, he still had rare speech locks (pronouncing "juss" in the stead of "juice" or forgetting a certain word), he still had to work hard to make it through life.
But it was about a boy who at age 4 didn't speak at all and had all the symptoms - except, perhaps, head banging - and who at age 11 was present in a large crowd and people who didn't know the family thought the autistic child was ... one of his brothers!
I'd say this is quite a success.
I believe ABA should not make such a fuss to anyone about anything except the harsh aversives which by large are not used anymore.
ABA is not essentially different than other kind of teaching. When you go in school, if you do what the teacher expects you to do, you are commended and you get good grades. If you don't, you are punished by bad grades, extra homework, additional summer school or perhaps a bad show from your parents.
ABA is based on the same conditioning that goes through the real life, we don't even notice it anymore. The only major difference is breaking the information in tiny parts - the discrete trial method - which is necessary because autistics do not learn naturally from the environment.
You have to give the information to them by spoon (I teach these days my son the "How" questions; he knows how to read Romanian almost fluently but he understands sparingly; I have to repeat over and over the "How" questions to ensure he understands even the most simple things - things that his younger brothers do with no problem).
So, whether ABA has good effects upon children with autism I have absolutely NO doubts. It is simply teaching adapted to the reality of autism.
My questions revolve around the rate of recovery (47% is simply not realistic) and what happens AFTER childhood.
So, I agree with you that there is a problem with the lack of studies about the outcome of recovered kids now in adulthood.
Another observation I'd like to make: the fact that autistic kids nowadays are in better shape than in the past is not very relevant.
Recovery is determined less by where the kids start from and more by how quickly they accumulate - according to what I've read in literature.
There were children who were almost normal who didn't recover and kids who were almost totally crippled who did. Nobody knows why.
My belief is that autism is not a single illness, but a myriad of illnesses with very different causes, very different neural realities which happen to produce similar manifestations.
When all these illnesses will be understood maybe we'll understand why ABA worked with some and not with others.
Look at blood transfusions. They were performed long before the group types were known. Doctors did transfusions because they observed that in some cases worked, but didn't know why.
I believe we're in the same situation with autism. ABA, as imperfect as it is, it's still the best option we have at our disposal as of today.
I'd love to see something better, but I doubt it will arrive soon.
There are other studies demonstrating the efficacy of ABA or as it is sometimes termed EIBI. None of them have duplicated the Lovaas results of 50% recovery.
ABA is not as successful as the Lovaas study would indicate, and even the 10-20% recovery rate recently published is buoyed by the greater number of high-functioning children today.
All that being said, ABA is still a child's best chance at recovery or palliation Also when children are enrolled in EIBI programs, they are young enough to not have had the developmental spurt in which they move up the spectrum. In other words they appear to be low-functioning. The spurt happens whether or not ABA is used, but I wonder if more children are having the spurt thanks to ABA. The last is pure speculation.
Hi Marius, thanks for the correction, I will go back to the post and change the wording.
Looked what I've found on the autism section of about.com.
The 9 children who have been reported as recovered in the 1987 study of Dr. Lovaas have been followed up at 13 years of age. 8 out 9 were still "indistinguishable from peers".
Moreover, the article says that they have been followed up into adulthood and "a report on their status will be published soon".
In any case, they didn't regress so much to produce an outcry from the parents that the therapy completely failed - it would have produced a lot of fuss in the press.
Do you think ABA would work better in severely autistic people with at least normal intelligence?
I imagine that ABA wouldn't be very effective in severely autistic people who are also severely retarded.
I have never had ABA but I know my cousin has and he is around 19, 20 and has never talked, still profoundly autistic, also retarded.
I imagine if I had ABA I would respond to it much better since I have at least average intelligence.
About 70-75% of people with severe autism are retarded, so the fact that ABA may only work in 1 in 4 or 5 people is an accurate figure reflecting normal intelligence in people with severe autism.
Marius: Lovaas has received funding to publish the adult outcomes at taxpayer expense. This has been many years to this day they have never been published in a peer reviewed journal. There have been informal presentations at conferences and I emailed Tristram Smith who was one of the graduate students supervised by Lovaas during the 17 year period that the study was in progress asking him about what was presented in the conference. He emailed me a power point file which was just one page describing some of the psychologic tests these kids have had as adults. He told me Lovaas had wanted to publish the adult outcomes but "logistical problems" whatever that means prevented them from doing so, so he was not optimistic about the adult outcomes ever being published, so I wouldn't hold my breath if i were you.
As I have said before, from my own experiences, subjective parental ratings of treatments are not reliable.
Hi Stephanie, good to see you on here again! This is off topic, but I wanted to congratulate you for having your artwork displayed. I tried to comment on your blog, but the way it was set up it was difficult for me and it would not take my comment.
So congrats from me on here!
Stephanie, you cannot speak of IQ for kids, since their brain development is not complete.
You can compute a QD (development quotient) based on tests looking at their general development. The Portage scale has 5 major areas, for instance, one of them cognition (the "intelligence" of the kid, so to speak).
This QD is normalized by age. The older the child is, the more skills he has to master. The normal is 100. Mild retardation is below 80.
The child of Mr. Damian, the guy who brought ABA to our land, went from 35 to normal in about 3 years. This was tested by the professional who put the diagnosis and two other professionals who didn't know the history of the child.
Now, it is not the initial QD most important, but how fast this QD grows under therapy. A high intitial QD does not predict a high rate of growth. So, the answer to your question is NO.
Perhaps your cousing was accumulating very slowly or not at all. The parents gave up and whatever he had gained he lost in a short span.
Jonathan, so your point of contention is that there are no studies proving that recovery lasts in adulthood, am I right?
In such case, I agree.
If we debate here whether recovery happens to children, I disagree.
Applying the label "recovered from autism" is not performed by parents (the rate would be over 80%, I guess :o)) but by professionals.
Responsible parents do the extra mile to test the child with independent professionals, as I mentioned the case of Mr. Damian.
Even in the absence of studies proving reliably that recovery lasts in adulthood, is ABA worthless?
My answer to this question is no.
But the future will surely give a better answer - by bringing to the fore that study about the "Lovaas kids", for instance :o)
To me ABA is worthless if there is no evidence of help in adulthood, like people being able to keep a job and having romantic relationships. Sigmund Freud said to love and to work are the cornerstones of our humanity.
Have you heard of the story of Peter Pan in Romania? It is a famous play/story in western countries about a boy who never grew up and always remained a child. Such is not the case of persons with autism. We are not peter pans. The sad truth is we grow up and have to have adult responsibilities and live and function in an adult world and there is no point of a treatment that does not allow us to do so, just my opinion.
I think development and general intelligence are very different. And true intelligence is often not measured by IQ tests it seems, the ability to solve problems.
A person can have severe autism and a high intelligence or have mild autism and a low intelligence. I think they would progress at the same rate, hypothetically speaking.
If given that test as a child I would've scored very low; my IQ was low as well, except for a few areas.
If given that test now I might score low depending on what was on it (comparing my development to others my age I am retarded), but now I score very high on certain parts of IQ tests (especially non-verbal). I have good problem solving abilities even though I can't prove it in many ways, especially verbal; but I can prove it through non-verbal means.
I think many more severely autistic people are of at least average intelligence but their intelligence is unable to be measured for whatever reason. I was considered to be mildly retarded at one point; I'm not.
It seems that if a severely autistic person had at least normal intelligence, good problem solving ability, than they would benefit much more from ABA than a severely autistic person who was also retarded. You could punish the retarded autistic person over and over and they might not ever understand or change their behavior but I think the one with higher intelligence would grasp the concept much more quickly. If I was depreived of food I would've figured out a way to get it; I might not of talked, but I would've done something quite clever to get it!
I think a person is born with a certain level of intelligence that can then be nurtured. I didn't grow up in an environmet nuturing to my intelligence and I only finished the 7th grade. I'm mostly self-taught with everything. It's hard to teach natural problem solving ability if a person is not born with it.
I know exactly what you mean about social skills,and interpersonal relationships.This article
Behavior Analysis and Intervention for Adults with Autismhttp://verbalbehavior.pbwiki.com/f/ABA_adult.pdf
seems to be one of the better ones out there describing what is available to adults.If this is typical,it seems quite lacking in these areas.Nor does it address issues like what happens to adults who had made major recoveries,and then regressed again.
Then there is this: http://tinyurl.com/qv5q7p
from Lovass himself.Pages 262-263 is where the important stuff is.
The Peter Pan story is popular here, too. My kids love it.
Although I do not share the position that ABA is worthless, your position makes me think very seriously about autism and recovery in adulthood. I thank you for this.
Your points are valid, recovery should be observed beyond age 13 and adult life is much more complex than what any autistic child, recovered or not, may ever experience. Actually, persistence of recovery in adulthood IS the true test for any therapy or - when this will be possible - a cure.
For an account that things that apparently go normal may take a bad turn, there is the sad story of Ann Bauer's son.
I think that ABA can be an effective teaching tool and what is called ABA today is done very differently than it was in the past. In modern forms of ABA no one would even dream of depriving a child of food or hitting them or using shock treatments. In my experience they don't even use the word "No" but would say something like "try again" instead.
But you do have a good point of about skills being maintained after they are learned. From my experience with my daughters I can say that once they finally understand a concept that is being taught to them that they will keep that skill and even be able to generalize a very specific skill into something general.
Let me give you an example from something that happened just this week. Up until this week my daughters have not seemed to understand the concept that people have names and that you can you can use a person's name to refer to them. They would occasionally use either dad or mama but that was rare. So our ABA team devised a program where they attempted to teach this concept. And after weeks of working on the concept it seems like it has finally paid off. Twin A addressed one of her therapists by name saying "bye,bye, Lisa" and telling her when asked "you Lisa". Since the breakthrough if we ask Twin A who someone is she will name them. Before this if we had asked her she would not have responded.
I don't think Twin A would have learned this skill without ABA or I should say would have taken a lot longer to learn it. Now, our experiences may not be typical as my daughters seem to be intelligent (although it is impossible to know for sure) and be on the more high functioning side (except for their communication skills).
Judge Rottenburg Center is the next county over from my university, I've heard it described as "worse than jail" and the "worst place on earth, from one of its former "students" who is capable of expressing himself. It is quite shameful that Lovaas's methods have far-reaching consequences into the present day. I also find it strange that the harsh methods used then were the spring-board for ABA's encouragement by the medical establishment now, even though it is now quite different from what it was back then. I never received ABA, so I'm not familiar with it. Drugging people up is really the standard practice for dealing with autistic behavior now, and all other disorders. Growing up, everyone, I mean EVERYONE with some kind of problem, not just an ASD, was on some kind of medication. It appears that throughout history three schools of thought defined mainstream medicine's stance on autism, first Bettelheim, then Lovaas, and now the pharmaceutical industry.
I've posted on my blog some findings on this respect.
They have no scientific value, yet those testimonies suggest that recovery is durable into adulthood.
Solid studies are necessary, I do not deny that.
It is obvious that the 47% success rate claimed in 1987 NEVER happened.
in 1987 - they used non-profesisonals and today they say that therapists need a BCBA license/certification.
So, how come "professionals" do not get anywhere close to the non-profesisonals?
AND why do they need a license? So that they can charge more????
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