Sunday, June 14, 2009

A better way to spend money to help autistics?

As regular readers of my blog know, I am a rather pessimistic person as far as what I regard the prognosis to be for most persons on the autistic spectrum. I am also very cynical about all of the money that is being spent with the intent of helping persons with autism, particularly when they are children. Of course in the more severe cases of autism, the kids, while aged out of the educational system under IDEA at 22, they still have money spent on them in institutions and group homes.

A few readers of this blog have commented on how I am always a critic, how my posts are always angry and I talk about what cannot be done for persons on the spectrum. I should offer some sort of solutions to the problems of autistics they say.

What these people say may be valid, but part of the problem is that I don't really have much to offer in the way of any solutions or ideas that will really help autistics function in society. I do not believe that autism is treatable let alone curable. But is it better to spend money on treatments of dubious value such as various DAN protocols, ABA, speech and occupational therapy whose results are questionable, at least to me? Or is it better just to accept the sad truth and just say that while persons can try to educate their autistic loved ones to the extent they can be educated, to try to help set up some sort of supports, other than that perhaps nothing really can be done that greatly improve the future of those on the spectrum. I have brooked no quarters that I long for a cure and I long for scientific research on the neurology and genetics of autism that at some point of time will point to legitimate treatments that will help autistic children, hopefully cure them and in the very best case scenario prevent them from becoming autistic in the first place.

It has been pointed out to me by some that these goals are very far off and not likely to happen in the foreseeable future. I will not be cured of my autism I have been told and it is quite possible no one else born in the last 6 years or so will be either. I must agree with these statements. It is true that the research that is funded by the federal government and by autism speaks and other entities has no short term practical applications. We can't just think in the long term. Autistic people need help and suggestions NOW. Last night an inspiration hit me and I have an idea how money might be better spent to help persons.

Before I state my idea I would like to comment on how money is spent on autism. We have the DAN practitioners that charge a great deal of money. Some of them I have remembered reading have hung out their shingles without clinical training or license of any kind. A few of them who are licensed physicians have been disciplined by their state medical boards, giving the DAN protocols a rather unsavory odor. The lack of peer review and evidence of DAN's successful outcome has not been daunting to most desperate parents. the secretin saga is one of the most flagrant and indeed saddest examples. Thousands of dollars are spent on ABA and some parents have taken out second or third mortgages on their homes to pay for this treatment that gives a promise of a coin-flip probability of complete recovery or cure for their children. The lack of published adult outcomes, the questionable methodologies of Lovaas (1987) have not deterred parents from trying to obtain this treatment for their children. Also, a great deal of money is spent on speech therapy, occupational therapy and other treatments of dubious value.

The Individuals with Disabilities Education act was passed in the mid 1970s with the intent of helping persons who are handicapped get the "free and appropriate education in the least restrictive environment" that they deserve. About 60 billion dollars a year is spent on special education, a 60 fold increase since the law was passed. This figure probably does not include attorney fees for special education litigation by both the parents and the school districts and the jamming of our court systems.

The IDEA in fact has generated a variety of supreme court decisions. The Shannon Carter case is of particular relevance as it paved the way for any person regardless of their license, credentials or lack of to hang out their shingle and be an autism practitioner. This is why ABA is usually done by college students most of whom have no license, qualifications or credentials and are not even old enough to legally buy a six pack. While there is board certification for ABA specialists, it is not done by the government as is the certification of doctors, dentists and psychologists. There are no government licenses or regulations and the BCBAs are accountable to no one but themselves.

Not only can special ed students be taught by uncredentialed teachers at taxpayer expense due to this decision, but apparently any aspie who was either self-diagnosed late in life or has a questionable diagnosis well into adulthood only after their own children were diagnosed with an ASD can apparently set up shop and charge desperate parents what the market will bear. I have been told that Michael John Carley who appears to have no formal training or qualifications is a paid consultant of some sort by the NYC school district. (Mr. Carley or anyone else can correct me if I heard wrong) Valerie Paradiz who also wrote about about her son and managed to receive some sort of diagnosis well into adulthood has hung out her shingle as an autism consultant and set up her own autism school. Ms. Paradiz is a Ph.D. in English literature with no formal training of any kind in autism whatsoever. Last but not least is William Stillman whom I have written about previously who self-diagnosed himself with Asperger's well into adulthood, has no qualifications whatsoever except a bachelors in education yet charges parents $100 an hour for phone consultations, though he is too ethical to charge for email consultations. He claims he can know exactly what an autistic child needs after spending ten minutes with him/her.

Are all these billions of dollars on autism well spent? I do not believe they are, so I offer an alternative. Instead of spending money on DAN protocols, special education, ABA, attorney's fees, etc. how about upon after receiving a diagnosis of autism at 3 or whatever age, the parents consult with a financial advisor. Instead the money can placed in the hands of someone (hopefully not a Bernie Madoff type) who will invest it wisely for the child. It might even be able to be invested in a tax deferred IRA type of account. A smart financial advisor would be paid approximately 1% of the portfolio which would be plenty of incentive to get good returns on the investment. The stock market though risky apparently generates returns of about 10% a year on average over the long haul. There are probably mutual funds that are less risky but could generate a fairly decent return over the long run. There might even be commodities that the savvy financial wizard could invest the money in.

Upon turning 22, the age which they would be normally aged out of special ed services in the USA, they could receive this account and it would become liquid. If they are too severely autistic to manage the money, a parent or other relative could be a trustee or executor of the money. If they are mildly autistic, they could likely become wealthy, possibly even multimillionaires if the portfolio was invested wisely, even with a conservative financial advisor. If they are lonely, plenty of people would want to be their friends. If they are horny males unhappy about their celibacy they will have the means to hire hookers. They won't have to worry about being fired left and right from jobs because they won't have to work. They also won't have to go to the trouble of applying and litigating for SSI. I do not believe the fact they never received ABA, chelation, DAN protocols, speech or occupational therapy etc. would make a difference in their lives or contribute to their being recovered from autism or being able to function better. Therefore I believe my idea is the best that can be done for persons with autism over the short term until cure and prevention are found.

Though I grew up in the 1960s before we had IDEA, ABA and the various autism treatments. My parents spent enough money on psychotherapy for me with various therapists to buy a huge building. This was in addition to the private special ed schools I attended that in those days were not financed at taxpayer expense. Also don't forget the tutoring I had for my perceptual motor problems and fine motor coordination and handwriting impairments that did not help me at all. Quite a bit of money was spent on that. My parents could have spent a fraction of that money on McDonald's stock in my name in the late 1950s when MCDonald's made their IPO and I would be a multimillionaire now. Or the money could have been invested in more conservative things and I still would have made out well. I would not have had to endure the humiliation of trying to make a living and being fired so much.

So for the readers of Gadfly who have complained I have no positive constructive solutions to offer, here is mine. If you have something better to suggest than the above, I welcome them. Good luck.

20 comments:

SM69 said...

Interesting coincidence, I have also made a post on my blog following the sort of argument you and I and others have had, though it is not as long as yours and partly duplicates what I have said here. Having spoken to you a few times, on your blog and by e-mails, I have come to appreciate that you will remain highly critical/skeptical of anything ABA/ RDI/ FastForWords/NeuroFeedback and Biomed (I’d prefer you drop the DAN name as this is only part of what can be done) have to offer, no matter the level of evidence provided.

You have mentioned Secretin before, and I have explained that almost nobody uses this anymore (at least in the UK), and this story should not be used as an excuse to refute very valuable biomed approaches. But I agree insufficient levels of evidence are being published of what can be done biomedically, though the reasons are quite easily understandable. Essentially most practitioners are unable/unmotivated to conduct some research and they tend not to think like scientists, but like clinicians, not research clinicians. The other reason is funding. In the UK, it is only now that funding can begin to be obtained for Biomed evaluation. Maybe the situation is different in the US, Jill James is one of the very few who has received funding for research. In my opinion, if a clinic or a group does well financially, it should use this money to fund research. But very few clinicians would do this. I have yet to fully analyse the Autism Speak 2005-2006 tax forms, I have not yet made up my mind about this, I want to discuss them with our accountant. But, generally speaking, I am also extremely critical of unnecessary expensive under the name of autism for ethical reasons.

There might be nothing I could add just now to convince you that kids are coming off the spectrum at the moment, through combined Biomed/ and often ABA intervention. Not every one benefit at that level, but many benefit significantly and any progress can be seen as positive. Yes there are individuals who progress without “recognized” intervention, but something extra is being provided to assist them, even if this is not even identifiable. I have not seen reports of these spontaneous recoveries either anyway, please let me know if there are any published in some form. At my very small scale, all I am hoping for is to report as rigorously as possible the progression made by the children. I am saying as rigorously as possible, not because I am totally crap, but because such reports are complex. Indeed, children are not genetically inbred mice receiving one single treatment- it is a lot more complicated than this. But I think research is feasible. I am certain than most decent individual witnessing what I and others have witnessed for so many kids would not really continue to be so stubborn about the causalities of today’s autism and treatment options. You are an adult and what has happened to you and what you could benefit from might be very different.

I’d also like to remind what I have said in other posts, what someone need at a given time is not always an intervention.

To have support as an adult is essential, and yes this is often down to funding. So, your suggestions are good, but why make them without at least trying the sort of intervention that can work? Money is important, but it will never buy anyone valuable relationships. Never, valuable relationships are gained from the skills it takes to develop them and maintain them. That is why support with this is needed in ASD. Most people need relationship to feel alive, happy an included.

jonathan said...

I have already explained the secretin deal to you, here goes again. It is just one of many examples of treatments that have been purported to do something for autism that have never worked. Steve Edelson who leads DAN of which you are a member of if I remember correctly has advocated for research in secretin and claimed it had the potential to be one of the most promising autism treatments in spite of multiple RTCs that have refuted this notion. He also misrepresented the work of Janet Kern one of the researchers his organization funded. This was published on AoA website where you and other members of the Edinburgh trust publish, so secretin's demise has been grossly exaggerated.

As far as I know, RDI has never undergone any sort of peer reviewed RTC. I have already discussed the multitude of problems ABA research has had in various gadfly posts which you can refer to. So, no, I don't believe there is a shred of evidence either of these are anything but fliers as far as autism is concerned.

When I see any evidence of biomed treatment efficacy in a peer reviewed journal I will believe that maybe there is something to it and these hapless parents are not being gouged. This includes you and the Edinburgh trust, I await you publishing the results in a peer reviewed journal as I have told you before.

Yes, money can't totally buy a relationship but until a cure and prevention or an effective treatment for autism is found I believe my suggestions are the best thing available.

Roger Kulp said...

Just curious Johnathan,have you tried to post anything over at Age Of Autism ?I think they are even less willing to listen to dissenting opinions than LBRB and their ilk.

They once ran a blog post about Noah Greenfeld.I posted some admittedly snarky comment about him not being vaccinated,and I have been blocked ever since.

Admittedly,you won't make any friends over there,if you say the DAN! protocols are a fraud,based on a largely disproven cause for autism.

And SM69,the criticism of DAN! is a valid one.They don't seem to be that interested in checking the qualifications and policing the methods of anyone who calls themself a "DAN! doctor".

Jim Carrey is worth a fortune.If he was really interested in proving the (non mitochondrial) vaccine/autism link,DAN! and their ilk were founded upon,and his wife still touts,he would spend whatever it took to prove it out of his own pocket.

Your idea is wonderful,Johnathan, but any parent who is desperate enough to bankrupt themselves going to DAN! "doctors",the Geiers,or worse,isn't going to listen.Look how AoA,and GR still defend Andrew Wakefeild.

They will see the slightest easing of symptoms as a cure,tout it all over their blogs,and double what they spend on this crap.Autism,even if "untreated" will vary in severity.

I'm curious,though,what you think of this:

http://childhealthsafety.wordpress.com/2009/06/03/japvaxautism/

......I'm Anonymous said...

Jonathan, its a thoughtful approach. There are financial vehicles called Special Needs Trusts that serve the purpose of what your describing. Met Life is one of the largest companies offering these sort of trusts in case someone would like to find out more about them.

SM69 "I have not seen reports of these spontaneous recoveries either anyway, please let me know if there are any published in some form."

There are dozens of studies if you look here is two that took all of 60 seconds to find on Pubmed:

Department of Psychology, University of Connecticut, 406 Babbidge Rd., Storrs, CT 06269-1020, USA. jamie_kleinman@yahoo.com

Autism Spectrum Disorders (ASD) diagnosis in very young children may be delayed due to doubts about validity. In this study, 77 children received a diagnostic and developmental evaluation between 16 and 35 months and also between 42 and 82 months. Diagnoses based on clinical judgment, Childhood Autism Rating Scale, and the Autism Diagnostic Observation Schedule were stable over time. Diagnoses made using the Autism Diagnostic Interview were slightly less stable. According to clinical judgment, 15 children (19%) moved off the autism spectrum by the second evaluation; none moved onto the spectrum. Results indicate diagnostic stability at acceptable levels for diagnoses made at age 2. Movement off the spectrum may reflect true improvement based on maturation, intervention, or over-diagnosis at age 2.

University of North Carolina at Chapel Hill, NC 27599-3367, USA. lauren_turner@med.unc.edu

BACKGROUND: Few studies have examined the variability in outcomes of children diagnosed with autism spectrum disorder (ASD) at age 2. Research is needed to understand the children whose symptoms - or diagnoses - change over time. The objectives of this study were to examine the behavioral and diagnostic outcomes of a carefully defined sample of 2-year-old children with ASD, and to identify child and environmental factors that contribute to variability in outcomes at age 4. METHODS: Forty-eight children diagnosed with autism or pervasive developmental disorder not otherwise specified (PDDNOS) at age 2 were followed to age 4. Diagnostic measures included the Autism Diagnostic Observation Schedule - Generic (ADOS-G) and clinical diagnosis at ages 2 and 4, and the ADI-R at age 4. RESULTS: Diagnostic stability for an ASD diagnosis (autism or PDDNOS) was 63%, and for an autism diagnosis was 68%. Children who failed to meet diagnostic criteria for ASD at follow-up were more likely to: 1) be 30 months or younger at initial evaluation; 2) have milder symptoms of autism, particularly in the social domain; and 3) have higher cognitive scores at age 2. No differences between children with stable and unstable diagnoses were found for amount of intervention services received. Among the children with unstable diagnoses, all but one continued to have developmental disorders, most commonly in the area of language. CONCLUSIONS: The stability of ASD was lower in the present study than has been reported previously, a finding largely attributable to children who were diagnosed at 30 months or younger. Implications for clinical practice are discussed.

Marius Filip said...

Jonathan

Before thinking of the social or sexual life of his child as an adult, a parent thinks of the school life of his child first.

And if something can help his child raise his IQ, go out of special education and enter mainstream school, it is already a great achievement.

Not necessarily relevant for the case in the US, but special ed here in my country is well below mainstream and there is a large gap between the two. If ABA can make my son graduate 1st grade of mainstream and not of special ed, it's well worth the effort.

I have a better idea than yours on how to spend money to help autistic kids. It would be taxpayers money, but a much smaller amount than you suggest.

This is my idea, laid out in several points. I expressed the same idea on Harold Doherty's blog as well:
1) the government makes a list of treatments he wants to put under scrutiny, including DAN, ABA, RDI, etc.
2) designs a set of minimal requirements that the practitioners have to satisfy.
3) designs a set of minimal procedures that the therapists must satisfy when administering the treatments.
4) designs a battery of tests across the whole set o treatments.
5) tests all the kids that undergo those therapies.
6) tests the same kids after one year and publish the results.
7) publicly endorses those treatments that proved their efficacy.

That would apply not on 19 kids as in the case of Lovaas. That would be a truly epidemiological study, with tens of thousands of subjects.

I am quite confident that ABA would be among the first in quality, if not the first, and that it would prove gains in development quotient of a rate of 50% or more over the natural course of child development. If that were true, ABA is not effective?

You speak about how your parents wasted a lot of money on you. Well, that's how the things were back then. Maybe people in the future, when there will be a cure to autism, will look back at us and say "Gee, they were doing primitive and ineffective things like ABA back then".

But think about that: I tested my son with ABLLS-R in December and he had 445 points. I tested him again in May and he had 804 points.

That's an 80% gain, equivalent of a jump from 27 months to 45 months of development. He's still well below his 63 months of chronological age, but if he gains 17 months every 6 months, he's got a real chance of recovery.

Sincerely, I don't think my testimony is any less worthy than your in terms of personal experience - from scientific point of view, none of them bears value.

Now, think what would be if the government agencies had statistical data proving that, under ABA, children gain - in average - 1,5 years of development for each half a year of therapy. Wouldn't that mean that money spent on ABA are well spent?

What's the use of having money for my child's hookers when he'll be 30 if I can't help him be closer to his typical peers now?

No, I don't think our children need that we do nothing and just watch how they remain behind their typical peers. We need treatments, and we need them NOW, before we have a cure.

And the society should do more in this respect.

The scientific backing from government agencies I am talking about solidly condoning one treatment or another (let that be RDI or DAN, I don't have a fixation with ABA) is worth much more than the billions of dollars in funds that you suggest.

SM69 said...

Thanks Jonathan, that was the response I was expecting. Maybe it is time that you consider Biomed more broadly than what DAN / Edelson proposes? As for your request for RCT evaluation of RDI or such alike (actually there are good papers on RDI), why don’t you ask your sister to explain to you what RCT means and imply in term of design? Perhaps then you will ask yourself how on earth a RCT trial could be conducted on such high level of intervention that cannot be blinded in any way? This is not a pill right, so alternative designs are required to evaluate such intervention, surely someone more influential than myself can explain this to you at some point. You are entitled to your opinion, and to be honest, I don’t think with regard to these interventions your opinion restricts your avenues much, but that would be very different if you had an autistic child. Yes, I will work my hardest on publishing these reports- but I don’t think they could ever change your mind. As I have said before ASD people can at times be their greatest enemies. Your mode of thinking is limiting your possibilities even more than a lack of social skills.

jonathan said...

Roger: I have tried to post things at AoA on a few occasions that did not agree with their position. I do not even think my comments were snarky or rude but polite comments disputing what they said and yes, they rejected my comments also, so your experience is not unique. As a general rule, AoA won't publish critical comments, but there occasional exceptions to that rule.

jonathan said...

Anonymous: Special needs trusts are something different from what I am proposing. This is just money that parents leave their handicapped children so that they will not be disqualified from SSI or other means tested government benefits packages after they die. What I am proposing is alternative ways to spend the money rather than on various special educational approaches or biomedical approaches which I believe have no validity, some of them funded at taxpayer expense and not just through the parents total net worth.

SM69 said...

...I’m anonymous:

Interesting- will look more- but have you got the main conclusions of these papers?:

Initial diagnosis 16 and 35 months...

These are not the children I talked about- the ones I have talked about are much older and were still autistic at 5,6,7 they are coming off the spectrum after this. But the points of these papers is a good one and not unlike what SBC has said regarding the accuracy of diagnosing (CHAT and M-CHAT for example) at very young age- in fact I do ADOS on 2 year olds at the moment and it is very hard to know what is really developmentally expected or not- so I can see there would be a lot of inaccuracy using this assessment at that young age. It is very hard indeed to have something truly reliable. And this is really the points of these papers.

farmwifetwo said...

Johnathon,

If I hadn't spent that money than instead of being peer age academically and slightly below socially at the age of 9, my eldest son would still be mild, non-verbal PDD, instead of NLD. He's had provincial preschool, regular school, and private speech therapy, in school OT, plus extra homeschooling, karate, cubs and library programs.

For my youngest son our dealings with IBI/ABA were a disaster ALTHOUGH... they did go through "the wall" and have him realize that signs, pecs and words all described objects and for that I am grateful. The other 12mths... are another story. He too was in the provincial preschool speech program and has received speech and OT at school.

He has gone from a child with severe, non-verbal PDD that had no social skills, no words, no toiletting, no ability to play... to a child at the age of 7.5yrs, that although doesn't speak recipricolly does give you a full verbal opinion when he has one about what he wants. He plays independantly with his toys and his Nintendo and computer games. He is learning parallel play - it is our "big thing" on his IEP at the moment. He decodes words at a beginning of Gr 3 level (he'll be starting Gr 3 in Sept) and language comprehension is at a Gr 1 - although they suspect higher but that's all that he can "tell them" at the moment.

2yrs ago this was all at a 24mth level.

I don't believe in any "therapy". Also, if you try to prove one is better than the other than you also have to look into what is done at home. You can do hours of therapy but if there is not follow through at home by the parents, then the child/adult never learns to put the learning into "real life" context.

As long as you keep teaching through homework style (work books), play style, going places, living.... a child will learn.

As to why I'm doing this... it's simply Jonathon... people have to live. My youngest son may never be out of care, my eldest by Gr 8 will be "recovered" and I'll have the papers to prove it. But as long as the little one can take enjoyment from going places, reading a book, watching TV and understanding what is being said, to enjoy visitors.... That's all that matters. It will have been worth every penny and every hour.

But... I've never overspent either and I refuse to do in debt looking for a cure that currently doesn't exist.

SM69 said...

From Harold Doherty's blog:

Diagnosed by an autism specialist before age 5 but no longer meet diagnostic criteria for autism.

This is a very different situation to that raised by papers linked earlier-

http://autisminnb.blogspot.com/2009/05/feins-autism-study-alan-griswolds.html


a study was presented at an autism conference by University of Connecticut psychology professor Deborah Fein showing recovery of between 10 and 20% of subjects originally diagnosed as autistic who were later determined to have lost the autism diagnosis after years of intensive applied behavioral analysis.

The full WP article, in fact makes several references to a study conducted by Professor Fein:

She presented research this week at an autism conference in Chicago that included 20 children who, according to rigorous analysis, got a correct diagnosis but years later were no longer considered autistic ... The study, funded by the National Institute of Mental Health, involves children ages 9 to 18.
...

The children in Fein's study, which is still ongoing, were diagnosed by an autism specialist before age 5 but no longer meet diagnostic criteria for autism. The initial diagnoses were verified through early medical records.

The WP article also indicates clearly that children recovered after years of intensive behavioral therapy. If the study pertained to an intensive behavioral therapy other than ABA I don't know what that would be and Mr. Griswold does not identify any such therapy.

jonathan said...

Farmwife: I was a child during the infamous Bettleheim era and spent many years in psychoanalysis. I went from age 2-1/2 to being almost completely nonverbal, feces smearing, tantruming very severely autistic to being very mildly autistic, able to graduate college and work more than I didn't for about 28 years until it became too hard and I ended up retiring. I could claim I was partially recovered also and if my parents had not spent the thousands of dollars on psychoanalysis that I would not have partially recovered. My psychoanalyst in fact took full credit for my recovery. Of course, she did not know what life would be like for me as an adult and all the hardships I would have to endure.

No one really takes psychoanalysis seriously as an autism treatment, yet the same claims for it were made in my time with me as an example of someone who recovered as you are doing today with your children.

Anectodotal accounts of recovery do not translate into empirical evidence unfortunately. So I really don't believe there are treatments that make a difference and that is the sad truth, though I know it won't dissuade parents from trying to do what they can for their kids and looking for quick fixes.

Marius Filip said...

Jonathan

I do not think that during the Bethelheim era there was anyone claiming full recovery from autism, as Lovaas and Catherine Maurice claim today. I may be wrong, but if it had been I don't think Lovaas would have made such a stir.

Regarding Catherine Maurice, I've put a post in English on my blog ("Durable recovery") about her testimonies. She claims persistence of recovery of her two autistic children into adulthood, her daughter is a sophomore. And Maurice mentions no autistic behavior in her children. This is as close you can get to a cure. It is, in fact, a cure, considering that autism is defined in behavioral terms. I.e. no autistic behavior = no autism.

I've also put another post in English about a case of recovery that may be, in fact, a deceit ("Recovery or deceit?"). So, Maurice's case, assuming it is as it sounds, seems to me largely unusual - to say the least.

I believe Bethelheim is dismissed today because ABA and other treatments arrived which are perceived more reliable. ABA and the others will surely be dismissed when something better will arrive - maybe a cure.

I wish ABA were a quick fix ...

jonathan said...

Marius: Bettleheim did claim full recovery for many of the students in his orthogenic school in his book The Empty Fortress He also wrote a scientific American article "Joey The Mechanical Boy" about one of his clients and I think alleged a full recovery for this person.

The reason the exact same claims were not made when I was a child that are being made now is because hardly anyone had heard of autism and most of the kids with autism in those days, myself included, were called something else or were not diagnosed.

I don't believe that replacing behavioral therapy with psychoanalysis has really made a difference in these children's life.

SM69 said...

Jonathan- what you say about ABA and psychotherapy leads me to think you just do not know what either of these are and how they work. Psychotherapy is suitable for NT people who have depression or are involved in some sort of patterns in terms of behaviors as a consequence of their childhood experiences. That is not what autism is about. However, HFA/ AS adults can benefit from this when they need to have some sort of assistance to understand themselves and others. ABA is about breaking down teaching in small steps across all areas that need to be taught with a systematic reinforcing and prompting strategies in place- then generalization of skills across areas and setting. ABA works best when combined with play or settings in which the child is allowed to express himself as he really is with full respect. RDI is based on ABA, PECS is based on ABA, a good Karate class is based on ABA i.e. the child is asked to performed a very specific move and the answers he will receive either from doing the right movement (fighting his opponent better), his teacher, parents etc will be what will assist his learning. What makes a programme works or not is whether the steps being taught are appropriate developmentally and socially for the child, whether the progress of the child are monitored accurately as way to guide further tests (even if this is intuitive evaluation as a good teacher can do) and how effective reinforcers are used. This is used across teaching settings, sport, teaching animals to learn new skills and people with disabilities. A good teacher uses ABA without knowing it. That is what it is.

The other thing that stop ABA-derived approcahes to work is the set of mind of the student. If the student refuses to learn for what ever reason, he will not learn. I don’t think this is seen in autism, but I would guess, adults like you, would find very hard to learn new things and take in new opinion, have the flexibility require to evolve. Instead, you much prefer to justify your lack of change in mind set claiming that it is all bogus. But you are not the only one. Some would repeat and repeat the same old arguments to give them an excuses to inactivity. Because they cannot move on, not because the beliefs they hold are correct. All they are involved in is to continue to prove to themselves their views are correct, their life in unfair and there is nothing to do about it, other than being angry at other people. And they would spit at anyone suggesting something that could bring a change to their life. These people will not learn, or only very slowly. This is much more challenging for an ASD adult to do this than for a child.

farmwifetwo said...

Jonathon,

That's where we differ. There will never be empirical evidence of recovery because there is no system by which to collect that information. So, some claim it's possible and some say it's impossible. I believe it is possible... but not magical... I think it depends on the child, the brain, those that teach him, and plain old... LUCK.

Recovery IMO means there is no need for services. That the person can live/love/work/drive/etc etc etc independantly. Nobody's brain works that same as anyone else's so I too believe "Normal is just a setting on the dryer".

My eldest son was dx'd at 2.5 w/mild PDD. At 3 with "speech and language delayed with global delays" b/c he was starting to label items. At 4 we had echolalia and in his case he would start a sentence - echo from tv - finish the sentence. At 5 the echolalia was gone and discriptors were still being used such as "Grandma white house, Grandma orange house".

At 6 he was dx'd with "a mild form of ASD" or verbally NLD w/ S/L delay. It had to have "autism" in the dx b/c the school had told me "it's just a learning disability so we don't have to do anything until the end of Gr 3". So, it took 18mths of slogging through the medical system but it was done.

At 8.5 (april) the child psych - who'd we'd spent 2hr w/ re: risperdal rebounding and now we're meds-less - told us he probably no longer met the criteria for ASD.

At 8.75 (sept) the psychometrist offered to have the Psychiatrist (school board) re:dx him b/c he feel the child no longer met the ASD criteria. His schooling is average, his social skills are just slightly lower than average but he's a late year baby so that means little.

Why haven't I done it... simple... I need the OT. I spent all of Gr 3 fighting to get OT services and the moment I pull that dx she's gone. http://www.keyboardinstructor.com/ This is why she's staying. Starting Sept in Gr 5 he is getting one of these. He has poor recall/short term memory skills, poor fine motor skills and he can't "walk and chew gum" at the same time - listen or write at the same time. They are hoping this helps.

The re-dx and the re-do of the psychometry exam are scheduled for Gr 8.

IMO a dx is for services.... and my son still needs this one.

S

jonathan said...

Lorene: It is you who are terribly confused and fail to understand anything I read in my post. I know far more about psychotherapy than you having had it for many years going back long before you were conceived. I do know about ABA. The point of my post which you missed entirely was that psychoanalysis was the treatment of choice in the late 1950s when my parents first noticed something was wrong with me and then the same claims were made for my recovery that are being made by ABA therapists for the recovery of others with autism nowadays. You really should read my posts more carefully before you write your verbose comments.

I know that ABA is bogus because there is no way in the world that an experimental group would have a 4:1 ratio of males to females in experimental and a 1:1 ratio of males to females in the control group in what was supposed to be something representing something close to random assignment. Since Baer claimed that the quasirandom assignment in Lovaas 1987 was a convincing as random assignment we must assume that there was a probability akin to being struck by lightning three times in a year to having two such differing groups by something resembling random assignment. The pre-test and post-tests were totally different and normed on different people. Lovaas 1987 also depended on the use of aversives to get results, something now outlawed in california where i live. There are many other methodological flaws in lovaas (1987) which I am not going to discuss with you.

It has nothing to do with your very condescending attitude that you have towards autistic adults not being able to change or just accept things. You can state these condescending notions all you want, but the facts do not bear out any of your contentions and I work by facts rather than condescending attitudes such as yours. There is no question at all that Lovaas (1987) was not a good study and it should not be used as empirical evidence that ABA does not benefit these children. This is in addition to the lack of adult outcomes that they neglected to publish in spite of receiving a lot of U.S. Tax $$$$ for. So, no it is you who is terribly confused and fails to understand many things not me.

Roger Kulp said...

farmwifetwo,

I find what you say about different types of therapy,none of which seem to be of the DAN!/biomed type,to be a lot more honest than the 100s of sites,and infomercials that say chelation,DAN! protocols,HBOT,or whatever the fad biomedical treatment of the day cured my kid's autism!He went from nonverbal,and nontoileting to top of his class in six months,with Dr.-----'s Protocol!For only 999.99 a month, your kid can too call now!!

ABA clearly works for some kids, like Conner Doherty.It's just that these kids may be in the minority.

Marius Filip said...

Roger: ABA works for most kids. What stay in minority are the kids who lose their diagnosis. Those are well below the 47% of Dr. Lovaas. Trumpeting this number is, I think, the only truly dishonest thing from the professionals and other interested parties in the ABA field.

But as long as ABA treatment remains a business affair in which BCBAs and even researchers found their consulting companies while the procedure is ignored by government regulations, we won't see this going away any time soon.

This is what I claim in my idea: we need governments involved in the validation of these procedures.

Jonathan: ABA is not bogus and there is more to ABA than Lovaas. If I understand correctly, your objections address the randomization procedure and the use of aversives in Lovaas 1987.

Randomization does not apply, I think, to a procedure that lasts 2+ years. It's not like a pill you take and see the results.

As far as I know, Lovaas was forced to give up on true randomization due to parental objections (understandably, no one wanted his child in the control group).

I do not know much about the checking procedures pre and post therapy, so I cannot say much. But I've just begun reading the Lovaas article from 2000 in which he discusses some objections.

I don't know if you've read it. One can find a copy at

http:// www.healthboards.com/ autism/ 9.html

(just eliminate the spaces).

I think you are wrong with your "all or nothing" approach.

I subscribe to some of your objections, mainly in the area of the studies neglecting the autistic adults. There are anecdotal testimonies that the effect last into adulthood (see Catherine Maurice cited by my blog post) but those don't count.

Yet, my response to the problem is different than yours. It consists in that the society should spend more time and more money into checking ABA (and other treatments) than discarding them altogether.

This, I think, is a better alternative because a complete cure won't happen any time soon and those kids do need help NOW.

You cannot dismiss ABA based on a few objections from Baer. Michelle Dawson has objections to ABA, too (see "The Misbehavior of Behaviorists"), but I don't assign her with much credibility.

Yet, ABA is backed by studies more than any other method.

Look what ABA is endorsed by (I found this by a quick google on the i-net):

* 6/9 children who entered before age 5 enrolled full-time in regular classrooms after 2+ yrs; 1/9 who entered after age 5 did so. Fenske et al. 1985. This was not an experimental study since it didn't have a control group, that's true.

* Partial and systematic replications of Lovaas model with comparison groups: Birnbrauer & Leach 1995, Smith et al. 1997, Smith et al. 2000, Eikeseth et al. 2002.

* Full replication of Lovaas 1987: Sallows & Graupner, 2005.

* Quasi-experimental study (no comparison group) of Lovaas model with independent diagnoses, objective measures of pre- and post-treatment functioning: Weiss, 1999.

* Studies of broad-based intensive ABA: Controlled study (two comparison groups): Howard et al. 2005.

* Other ABA models, quasi-experimental studies: Douglas Developmental Disabilities Center: Handleman et al. (1991); Harris et al. (1991); Harris & Handleman (2000). See also May Institute: Anderson et al. (1987); Luiselli et al. (2000)

I doubt very much that the Bethelheim method is backed by any independent verification besides Bethelheim's testimony.

Also, please notice that Lovaas and Bethelheim were contemporaries for a long portion of their lives. In fact, Bethelheim was accusing Lovaas of turning the kids into robots in 1967!

Bethelheim died in 1990. His work didn't produce any school of thought, most likely because Bethelheim's suppositions were truly leading to a dead end.

ABA will die some day or it will lose most of its current appeal. But this won't happen until something better arises at the horizon.

jonathan said...

Marius though Lovaas could not do random assignment he claimed that quasirandom assignment could be as convincing as random assignment. As stated before the experimental groups and control groups were not equivalent at all and it is statistically improbable such different groups could be produced by anything resembling random assignment. Random assignment of subjects into experimental and control groups is optimally necessary to produce results, though not always feasible. Smith et. al. used random assignment and did not get anywhere near the same results, only some limited gains in a small percentage of the participants. The Sallows study was not a lovaas replication as their methodology was different in that they lumped the experimental groups and control groups together to get the results they did. Had they kept them separate, the control group would have done better than the experimental group.

I will admit that I don't know as much about some of the other studies which utilized a group design (of which I don't think there are more than 5 or 6)rather than a single subject design. But, no I am not convinced there is any empirical evidence that behavioral therapy produces gains in autistics and they don't come out of their autism to a certain extent anyhow as I did with my Bettleheim era treatment (albeit most likely coincidentally).