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How Much Money Is Enough to Cover Costs of Autism Treatment?

By July 6, 2008

We are told, over and over again, that the cost of proper treatment for autism can range up to $70,000 a year. At the same time, however, parents of many children with autism have become, in essence, paraprofessional therapists - providing hours of therapeutic play and interaction based on various methods such as Floortime, Relationship Development Intervention (RDI) and SonRise. While there are costs for parents to be trained and supported in these methods, even the highest costs range somewhere in the vicinity of $10,000 per year - and that includes individualized consulting, conferences, and equipment.

In fact, the $70,000 a year pricetag is almost always quoted in connection with the cost of 40 hours a week of 1:1 Applied Behavior Analysis provided by a trained professional in a public school, home, or private setting. Added to that cost may also be the price of occupational, physical and speech therapy - but those latter costs are relatively tiny compared to the overwhelming pricetag for ABA.

There's no doubt that ABA is a tried-and-true technique for teaching skills to children (and adults) with autism. But are the costs really reasonable and appropriate? Here's the issue as it's laid out in a recent article in the LA Times:

The state [of California] spent $320 million last year, up from $50 million a decade earlier. Nationwide, the tab is $90 billion annually, a figure expected to double in a decade.

Parents, in growing numbers, say insurers aren't doing their part. Proposed class-action lawsuits -- including one filed in April by Arce against Kaiser and another filed late last month against Anthem Blue Cross -- allege that California's largest health plans are shirking their duties to autistic members.

Health plans say they cover medically necessary care. The problem, they say, is that parents ask for treatment that insurers deem experimental, or for basic skills training that has long been provided by state-funded regional centers and schools.

"What we're concerned about is we're seeing a shift of the state's responsibilities over to the health plans," said Chris Ohman, president of the California Assn. of Health Plans. "To just say 'We need to have health plans cover all treatments' could have unintended consequences."

But Kristin Jacobson of Autism Speaks California contends that the healthcare industry has "washed its hands of autism entirely." Parents of children who don't qualify for public programs "bear the full burden of the treatment costs and pay their premiums," she said. "They aren't asking for a free ride. They are paying premiums."

Is there any way to manage these costs? It seems to me that there must be options available that have yet to be explored. Insurance doesn't cover the full cost of any medical procedure; instead they negotiate a standard fee that's well under the cost that an individual would pay without that insurance. Yet the cost of ABA seems to be figured at approximately $35/hour per child (assuming a $70,000 pricetag and 40 solid hours of 1:1 ABA per week for 52 weeks a year per child - surely an absolute ceiling relative to treatment).

Even the good folks at the New York State Health Department suggest that 25 hours a week of therapy may be sufficient for some children. And even school districts and agencies that provide ABA on a regular basis provide fewer than 52 weeks per year of solid therapy. After all, even children with autism have to get a little exercise... eat meals... go on vacation... and generally engage in some activities other than behavioral therapy.

What's more - 1:1 ABA therapy may be overseen by a Ph.D. professional - but it is almost always administered day-by-day by a therapist with relatively minimal training and experience. Does it really make sense that that individual should make something like $70,000 per year to work with an individual child - or that that therapist should work with that child 40 hours a week, 52 weeks a year? Even dedicated parents who have taken on the job of fulltime therapist to their child take occasional days and hours off - or choose to engage with their children in non-therapeutic ways from time to time.

In short, it seems to me that something is very wrong with the way we're figuring costs, managing resources, and negotiating fees for autism treatment. What are your thoughts?

Comments
July 6, 2008 at 10:07 pm
(1) anonymous says:

your perceptions on ABA and its costs are actually incorrect. The $70,000 to cover the costs of Intensive Behavioral Intervention (a form of ABA specifc to treating children with autism and developmental disablities) does not go to one person. A child receiving this treatment is working with a team of 3-4 therapists and this team is supervised by a psychologist or professional with a Masters in Applied Behavior Analysis. Often therapists that are hired privately are students who still need to go through training and are typically paid $15/hr, not $35. IBI is scientifically proven to be effective when provided for 25-40 hours a week, 52 weeks a year. That’s why it is called Intensive Behavioral Intervention, and its that intensity that makes it such an effective treatment for these children. Yes, it is costly, but in the long run, it is more cost effective to pay for the treatment while the child is young then foot the bill for institution/residential care when the child turns 18, is no longer part of the school system, and cannot care independently for his or herself. Not to mention that these parents have enough on their plates caring for a child with autism, should worrying about where to come up with $70,000 for necessary treatment all on their own really be added to their stress and worries?

July 6, 2008 at 10:43 pm
(2) Lisa says:

ABA is a terrific teaching tool for kids with autism – but so far as I’m aware there’s no longitudinal research at this point that shows that people who go through such intensive ABA are in fact likely to live independently. The suggestion is “pay now or pay later,” but I’m not sure it’s really an either/or – in many cases it may be a “both/and” situation.

But setting all that aside – assuming that ABA is the best choice for all children with autism (and some people would disagree with that premise), surely there must be a way to lower or negotiate or otherwise support such enormous costs.

According to the IDEA, children can remain in school not until age 18, but until age 21. At that rate, the school district, insurance company, or other agency would pay approximately $1,330,000 in ABA fees alone for each individual child with autism. That doesn’t include, of course, any other costs involved with raising and educating a child. And that’s a per-child cost – not the cost of educating all special needs children in the district.

While I am the parent of a child with autism and care about him deeply, it’s easy for me to understand why taxpayers, parents, and insureds have concerns about this.

It’s not reasonable to expect parents with autistic children to pay individually out of pocket for ABA, any more than it’s reasonable for patients to pay individually out of pocket for surgery. But when you see your HMO’s bill for surgery, you see that the hospital charged some enormous sum… the HMO paid a far lower sum… and the hospital called the bill “paid.” The HMO negotiated the fee.

Surely there is room for negotiation when it comes to the cost of ABA therapy.

Lisa (autism guide)

July 6, 2008 at 11:00 pm
(3) Sandy says:

From parent’s I’ve spoken with, many have one ABA therapist, not a team of more than 2. Since all children are different, it’s hard to say of what any therapy will keep a child from institution/residential care when the child turns 18. ABA in no way means this still is not a possibility. Since all kids are different, my child diagnosed with severe autism, infantile onset has never had one minute of ABA therapy and I hardly expect his future is pre-planned as a result to an institution/residential care when he turns 18. Such a statement being said to any parent would surely make them jump for ABA therapy, fork over the 70K and in the end the child’s fate may still be that they can not live on their own without living support.
I don’t necessarily even agree with 40 hours of anything that also includes a therapist. It almost makes the child then dependant on the therapist. Many have said that much ABA results in a child more looking like they were institutionalized than that of a child never getting ABA. As for the cost, again it’s supply and demand. many do have little training and many claim to be certified when they’re not. There really should be some watch dog reporting of this. Most insurances will cover O.T and Speech and they do consider many other things alternative even if the autism community considers it mainstream intervention. If ABA is at all related to the education, then insurance companies are going to deem it an educational issue, not medical.

July 6, 2008 at 11:15 pm
(4) Sandy says:

I don’t think ABA is too comparable to surgery, unless it’s elective surgery. But I understand the concept you’re trying to express: a negotiated fee and truly, once that happens, ABA would be more affordable to many. Because there is not, the fee can be sky high due to the supply and demand.

And by the way, for those who have part time ABA therapists, or 3 to a family, those therapists are more than likely getting their 40 hrs in by working with multiple families, not working part time with the one.

July 6, 2008 at 11:33 pm
(5) Jennifer says:

I am a mother of a 3 year old with Autism. My son has 3 ABA therapists, 2 speech therapists and one OT therapist. He gets a total of 25 ABA hours, 5 Speech and 2 OT. My son has come so far. How could we not pay for our children to get the best treatments available. They are our future. The therapies are covered by the state but we also see a DAN Doctor which costs us $1000+ a month not including all gf/cf food that is not covered because its considered experimental. There are many kids who are recovering from autism today due to bio-medical protocols. My son is well on his way to recovery. If the state did not cover the aba, speech and ot we would never be able to afford a DAN Doctor which in my opinion should be covered by our insurance companies!!! As a middle class family we are just making ends meet, for less fortunate families they will not even be able to try bio-medical treatments. Its very unfair! How cruel for anyone to question money going to children with special needs. They deserve to get the best treatment available out there.

July 7, 2008 at 11:33 am
(6) Autismville says:

Jack’s ABA has always been delivered by a team of at least 5 therapists, including a minimum of a master’s level BCBA to oversee everything.

July 7, 2008 at 3:08 pm
(7) val says:

There some real issues of why Dan doctors should not be covered but instead have caps of what they should be allowed to charge.

Many do not have malpractice insurance or are not board certified, and the Deafest Autism now protocol has been shown in studies to have a limited success on their own. They also have a 1 day training. Specialty doctor training should be a year to three years.

The few things that do work they over charge for.

I feel should be allowed to charge 15 to 70 an hour because of those issues.

Save that $1,000 a month.

July 7, 2008 at 3:11 pm
(8) val says:

A teacher gave me a aba training session and a assmeant for free so that I could do it all myself over the summer .
I do Engagement therapy, play, sensory as well.

They don’t offer hardly anything here but OT every few weeks and speech every few months.
I cannot get speech without getting my family on a plane.
So I saved a bunch doing the therapy myself.

July 7, 2008 at 4:01 pm
(9) Thomas D. Taylor says:

Regarding DAN Doctors, there was an article on them entitled:

“The great autism rip-off … How a huge industry feeds on parents desperate to cure their children”

Google it to read more or type “Http://” and insert the following:.

http://www.mailonsunday.co.uk/health/article-1023351/The-great-autism-rip—How-huge-industry-feeds-parents-desperate-cure-children.html

July 7, 2008 at 4:12 pm
(10) Thomas D. Taylor says:

There is no doubt that many programs and products can be of assistance to people on the spectrum, but it is important to remember that if parents and caregivers and autistics themselves would self-educate, they could be providers to themselves without the expense of hiring “professionals”.

There is no medical training or certificate required to be an ABA therapist.

oregonspeechandhearing.org/Archives/Ethical1.asp

“Ethical Considerations When Asked to Collaborate with ABA “Therapists.” ”

“Although many ABA practitioners in the field are skilled, the area of ABA is loosely structured and poorly regulated. Board certification has been slow to catch on and essentially anyone can hang a shingle proclaiming expertise in Applied Behavioral Analysis. In the State of Oregon there are only two “board certified” analysts (BCABA).”

The result of such people promoting themselves as ABA therapists has been the outright abuse of autistics.

A previous poster was correct in stating that there are no long term studies to indicate that ABA works. the article states::

“There is significant debate over the effectiveness of ABA/verbal behavior approaches when compared to social-pragmatic language interventions. While I have seen children with autism benefit from a combination of both, legal and ethical difficulties arise when asked to collaborate with ABA “therapists”.

Read

users.1st.net/cibra/testimonyindex.htm

“Black and Blue, nightmares, depression”

where it says:

“Our child was enrolled in an Applied Behavioral Analysis program at our local University.”

and

“He now suffers nighmares, lowered frustration tolerance, he is afraid where he never was before, and we can’t drive by the school because it upsets him so much. His self-stimulatory behavior has increased dramatically. Our once happy loving little boy is now plagued with periods of depression, mistrust and physical discomfort. All in the name of Research.”

July 7, 2008 at 4:30 pm
(11) autism says:

Actually, there are a great number of studies that say ABA works in the short term – but of course what that really means is that ABA therapy meets the goals set by the terapist.

Part of the reason for ABA’s success rate
is that the goals set
are usually extremely concrete and easy to measure (eg, imitating specific words or behaviors).

BUT -

An earlier poster suggested that it’s reasonable for society (in the form schools, insurance, or government agencies) to spend over a million dollars on ABA when a child is young because ABA will lead to independence.

There’s a problem with that argument. So far as I’m aware, there are no LONG term studies to show that children who receive intensive ABA from an early age are MORE LIKELY than similar children who receive different therapies to become independent adults who need few or no supports.

One problem I see with “autism education” in general is that it’s mainly training for participation in typical schools. Schools are very specific settings with very specific sets of rules and expectations. And they are very, very different from running a household, holding down a job, paying taxes, and so forth.

Of course, you can teach a person to write a check using ABA. But I’m not at all sure you can use ABA to teach a person how to think about saving money… managing expenses… and generally managing abstract, long term goals.

Lisa (autism guide)

July 7, 2008 at 6:20 pm
(12) Kenneth F. Reeve, PhD, BCBA says:

Lisa,
In your previous post you said “Actually, there are a great number of studies that say ABA works in the short term.”
Yes, that is correct. There is also a peer-reviewed published study that was a follow-up to the Lovaas 1987 study. It showed that the gains made by the best outcome children in that study of ABA were maintained for at least 5 years. To my mind, 5 years is not short-term.
McEachin, J.J., Smith, T., R Lovaas, O.I. (1993). Long-term outcome for children with autism who received early intensive behavioral interventions. American Journal of Mental Retardation, 97, 359-372.

You also said “but of course what that really means is that ABA therapy meets the goals set by the terapist (sic). Part of the reason for ABA’s success rate is that the goals set are usually extremely concrete and easy to measure (eg, imitating specific words or behaviors).”
Any study that is to meet the criteria of good science would need to fulfill these requirements. Specific concrete goals must be set or else treatment effects cannot be measured. Without a specific prediction as to how an in intervention will affect a child it is impossible to determine whether an intervention was effective. By chance alone, something will improve. Predicting WHAT will improve is good science. Goals set do not have to be “easy to measure” but they must be defined so that we achieve agreement among those doing the observing.

You also say “One problem I see with “autism education” in general is that it’s mainly training for participation in typical schools. Schools are very specific settings with very specific sets of rules and expectations. And they are very, very different from running a household, holding down a job, paying taxes, and so forth. Of course, you can teach a person to write a check using ABA. But I’m not at all sure you can use ABA to teach a person how to think about saving money… managing expenses… and generally managing abstract, long term goals.”

A quality ABA program will always include teaching in the home setting and the community so that individuals can learn to participate in all the opportunities that a typical learner can. This is true for young children as well as for older individuals. It is certainly true, however, that the opportunities for learning independent living skills for older learners is still wanting, not due to a lack of knowledge in the field of ABA about this but due to a lack of resources to implement such programs. If any readers would like to learn about a quality program for older individuals, they might want to inquire at a site like the Princeton Child Development Institute.

July 7, 2008 at 6:34 pm
(13) Kenneth F. Reeve, PhD, BCBA says:

Thomas D. Taylor says “Board certification has been slow to catch on…”
One might wish to examine the website of the Behavior Analyst Certification Board (www.bacb.com) to see that this statement is inaccurate.
Thomas D. Taylor says “…and essentially anyone can hang a shingle proclaiming expertise in Applied Behavioral (sic) Analysis.”

Yes, and anyone can hang out a shingle proclaiming expertise in the Miller Method, RDI, or Floortime. Consumers of autism treatment should determine whether the “ABA Therapist” they are working with is in fact board certified. If the individual is not, then the consumer should continue to search.

“The result of such people promoting themselves as ABA therapists has been the outright abuse of autistics.”

Although it is certainly possible that someone calling themselves an “ABA Therapist” committed abuse, there is a strong ethical code that is part of board certification in behavior analysis. Should anyone who is board certified be proven to have engaged in abuse, then they would lose their certification, among other consequences. To condemn a field of study because of the actions of someone who is not trained in the discipline according to minimal standards of competency just doesn’t make sense. If that were the case, no one would see a dentist, physician, mechanic, lawyer, or teacher as a result of an isolated instance of an incompetent practitioner. One should check the section on ethical violations on the BACB website if there is a question about an individuals status in the field.

July 7, 2008 at 9:36 pm
(14) Jennifer says:

I am not saying the DAN protocol works for everyone but it is for my son. A little over a year ago my son never responded to his name, hand-flapped all day and stimmed on wheels all day and had zero eye contact. With the 37+ hours of therapy (ABA, OT & Speech) I did not see the change I have seen with the DAN protocol. Today he is speaking in 5-6 word sentences, responds to his name and his eye contact is at 80%. The aba did help but without the diet and the dan protocol my son would not be where he is today. At 2 years old my son was diagnosed and was at the level of a 7 month old. In a year he has come so far.

I could understand if it not working for other children you can knock it but every penny has been so well worth it when my son looks at me and tells me he loves me!

July 7, 2008 at 9:37 pm
(15) Sandy says:

Actually, some of us can remember the controversial ABA and the abuse that went on not so many years ago. As a result, they came up with the ‘certification’ for it’s therapists. Prior, they never had certs. I still remember seeing on news show, 20/20 or Nightline, maybe 60 Minutes, on this very topic of abuse. My son is only 9, so it wasn’t that far back in years that this controversy surrounding ABA was out there. For insurance companies not to consider this alternative, my guess is they’d have to get past this aspect. I know our insurance company needed 60 day reviews of progress for speech and O.T. If there wasn’t the progress shown, they could deny these services. Now anyone can write about anything on these forms and rish insurance fraud, however ABA does not work for every child but speech and O.T is something all kids with autism can benefit from and show improvements. Not very many parents only do ABA, so it’s difficult to determine which of the interventions are really responsible for outcome, or if it was a combination of them all. I would then like to see the studies of only ABA being the intervention, not a stdies that excluded the multiple other ongoing interventions.

I am all for insurances covering speech and O.T.

DAN! doctors no. If there was a medical need, insurance would cover it and about every child on a DAN! protocol all have the same findings and the same protocol plan, which I personally find odd. Insurances companies genrally wouldn’t pay for vitamins or diet related foods. Those are costs to the parent and they always will be.

July 7, 2008 at 11:53 pm
(16) Liz Parker says:

You ask, “How Much Money Is Enough to Cover Costs of Autism Treatment?”

Let’s replace Autism with “heart attack.” Gosh, those cost us about $60B annually. How about “cancer?” Golly, we spend over $50B annually. How about “diabetes?” Would you believe $174B? So why, exactly, are we griping about providing an appropriate quantity of quality services to children, who have their whole life in front of them?

It seems to me that $70,000.00 annually is a bargain when the cost of institutionalization of that individual would cost upward of $85,000.00 annually (and provide minimal therapeutic care); at least providing therapeutic intervention offers the child the opportunity to develop a skillset that would allow independence.

Now, let’s look at the true cost of Autism for an average middle-class family willing to mortgage their future to provide their child the opportunity to have one…

Organic food which also is free of gluten, casein, soy, and any other allergens that child cannot consume: $10,000.00.

Supplements to make up for the fact the child’s intestines absorb very little of the nutrition provided in pure and healthful food the child eats, digestive enzymes to allow child to derive as much nutrition as possible, and probiotics to enable the child to have appropriate bowel movements: $3,000.00.

Pediatrician (Defeat Autism Now doc, if you really want to see progress) and specialist (GI, Orthopaed, Psych, Neurologist, Developmental Pediatrician) visits (assuming some insurance coverage, but not including any lab-work): $4,500.00

Applied Behavioral Therapy using Verbal Behavior (so the child can develop pragmatic capability), Positive Behavioral Supports, Errorless Teaching, and mass trials using Discete Trial Training; helping the child learn to: eat, bathe, dress, talk, socialize, play, speak, learn, build academic knowledge, communicate, and everything else a “typical” child learns with no effort at all (25 hours a week with CABA, 8 hours a week with CBA, program oversight by Psych): $70,000.00 (this IS the real number).

Tuition to a private school that will implement the Behavioral program designed by your child’s team of certified and successful therapists: $6,000.00.

Lost wages for one caregiver who is now responsible to maintain the “pharmacy,” procure organic and allergen-free foods from internet and far-flung health food stores, ferry child to appointments, special school, and therapy, spend requisite hours poring over scientific, technical, and medical white papers, journals, and other publications in search of the “silver bullet” that will return your child’s good health, file, re-file, amend and re-file, appeal, and otherwise pursure re-imbursement from insurers, cook and bake special meals and treats so the recovering child “fits in” with “neurotypical” peers, and act as therapist in all non-intervention hours: $55,000.00.

Ballpark annual cost to recover one child with Autism (in my experience, barring unexpected evaluations/labs/treatments/therapies): $147,500.00.

Having a Mastercard with no credit limit? Priceless…

So, to answer the question, “How much is enough to cover Autism treatment,” I say much more than a Civil Servant with 20 years of service brings home. Especially if that Civil Servant wishes to pay his mortgage, insurances, utilities, car payments, and feed and clothe his spouse and other two “typical” children.

So what should we eliminate, in order to live within our means? The diet that eliminated seizures and cleared our daughter’s head, helping her to take note of an express an interest in our world? Maybe
the supplements that ensure her good health, fully functional brain, and physical growth. How about cutting out the professionals who direct and supervise her complicated recovery and ensure she continues to progress in a safe manner? Well, we could eliminate the therapy that painstakingly dissects every little thing she needs to learn, then develops a methodology to teach her and implements that method, taking data with every exposure (in the hundreds of exposures)and assures she has really learned each step of the way so that she can “keep up” with her age-peers in all of life’s domains. Jeez, how about sending her to Public school; oh yes, they declared that providing educationally relevant goals would be “like providing her a Cadillac and she is only entitled to a Kia.” Well, hey, send Mom back to work and hire a “nanny” to do all of the scut work; oh, nannies cost more than mom can earn…Where were we?

Oh yeah, “How Much Money Is Enough to Cover Costs of Autism Treatment?” More than the State and Federal Governments, Private insurers and charities are willing to give. I say it is about time to ask the source of this epidemic to pitch in and help out. I think it is time for Big Pharma to both, step up (pay) and step off (stop injecting known poisons, toxins and carcinogens into our babies).

July 8, 2008 at 12:11 am
(17) Liz Parker says:

PS – Though you didn’t ask, my beautiful little girl is doing GREAT! Thanks to her plan of care and amazing team of professionals, she often is the only one who knows she has Autism. She “caught-up” five years in less than three, and appears “typical” to strangers. Yes, she still has some distance to go to complete independence, but it appears she will get there!

How Much Money Is Enough to Cover Costs of Autism Treatment? Maybe a more appropriate question would be, “How much money would you want spent if you suddenly suffered a severe neurologic event that left you, apparently, permanently disabled with autistic-like symptoms just one day after getting the Flu, Tetanus, Hep-, HPV or other vaccine?” Think VERY carefully before answering…There but for the grace of G-d go I.

July 8, 2008 at 8:02 am
(18) Sandy says:

heart attacks, cancer and diabetes are all life threatening things often with mortality rates. It’s hard to compare autism to any of those things. People who are allergic to things, generally they avoid them, insurance never covers it.

I know two people who suffered severe neurological deficits as adults, of course unrelated to vaccines and they too have out of pocket expenses and lost wages as a care giver. They had their whole life ahead of them too.

July 8, 2008 at 10:37 am
(19) Kenneth F. Reeve, PhD, BCBA says:

Sandy says “Actually, some of us can remember the controversial ABA and the abuse that went on not so many years ago.”
I’ll say it again, abuse has no part in ABA, or any other therapy, for that matter. Individuals who have committed abuse were not properly trained in this discipline. If a speech therapist abused a child I would not abandon speech therapy. If a pediatrician abused a child I would not abandon medicine. If an occupational therapist abused a child I would not abandon that either. Rather, I would condemn the individual who committed the abuse.
“As a result, they came up with the ‘certification’ for it’s therapists.”
Yes, you are correct. Certification in behavior analysis was developed to allow consumers to identify individuals who have demonstrated competencies in the field of ABA. Certification was developed so that parents and school districts would have some indicator of quality of a person’s training. To obtain certification, individuals must take 5-6 grad level courses in behavior analysis, be supervised by another board certified behavior analyst for at least one year of full-time employment, and must then pass a rigorous standardized national exam.
Sandy says “ABA does not work for every child but speech and O.T is something all kids with autism can benefit from and show improvements.”
In the first part of your statement, by “work,” I assume that you mean recover or show substantial improvements. If that is what you mean, then you are incorrect. At least half a dozen peer-reviewed studies in scientific journals have demonstrated that most children in these studies have either recovered or made substantial improvements. A small number of children made no progress. In the second part of your statement, you state that all kids can benefit from speech and OT. According to whom? If there is a single peer-reviewed research study backing this claim I would be most interested in reading it. I am not denying that OT or speech can be beneficial. Rather, I am saying that this claim is not currently validated.
Sandy says “Not very many parents only do ABA, so it’s difficult to determine which of the interventions are really responsible for outcome, or if it was a combination of them all.”
This is a good point if it were true. In studies assessing the effects of ABA on autism, there have certainly been groups of children receiving only ABA that were compared to groups receiving combinations of different therapies. In all cases, the ABA-only groups made more gains.

Sandy says “I would then like to see the studies of only ABA being the intervention”

Sure. Go to this webpage which links many of the studies you are asking to see: http://www.ctfeat.org/aba.htm

July 8, 2008 at 11:05 am
(20) autism says:

Ken – I think one problem we run into when we speak of “ABA” is that “ABA” is not consistent across the board. Discrete trials is not the same treatment as, say, ABA in a naturalistic setting.

I’m curious, therefore, about the studies you cite. Is there an effort made in those studies (so far as you know) to ensure that the actual program provided is similar across the board?

Quite frankly, it’s hard to believe that kids who receive 40 hours a week of straight discrete trials can then go on to function comfortably and successfully in a typical classroom. After all – they’ve never BEEN in a typical classroom! On the other hand, I can well imagine that kids who receive 1:1 ABA in a whole range of settings (including groups with typically-developing kids) might do very well.

Lisa (autism guide)

July 8, 2008 at 11:51 am
(21) thomas D. Taylor says:

Just a word about DAN protocol:

In an article entitled:

“The great autism rip-off … How a huge industry feeds on parents desperate to cure their children”

http://www.mailonsunday.co.uk/health/article-1023351/The-great-autism-rip—How-huge-industry-feeds-parents-desperate-cure-children.html

An investigator poses as a parent of an autistic and circulates among alternative practitioners. Many of these are DAN doctors.

We learn that:

“DAN! practitioners often recommend chelation therapy – injections intended to detoxify the blood of heavy metals, the treatment that led to the death of autistic five-year-old Abubakar Nadama, a doctor’s son from Batheaston, Somerset, in 2005.

“By speaking to autism experts and GPs, I was able to identify five key players in the DAN! movement in the UK and Ireland.

“My first encounter was with Dr David O’Connell, a former GP. His clinic is promoted by the Autism File, a magazine that supports the DAN! approach.

“Within moments of our first telephone conversation he tells me what, no doubt, every parent of a child with autism longs to hear: ‘Your son could recover.’”

The article goes on to say how much money would have to be shelled out for quack cures that failed to help any autistic who was subjected to them despite the doctors’ assertions that as many as 2/3s of the patients could “recover” from autism.

July 8, 2008 at 12:08 pm
(22) Thomas D. Taylor says:

Kenneth said:

“Although it is certainly possible that someone calling themselves an “ABA Therapist” committed abuse, there is a strong ethical code that is part of board certification in behavior analysis. Should anyone who is board certified be proven to have engaged in abuse, then they would lose their certification, among other consequences. To condemn a field of study because of the actions of someone who is not trained in the discipline according to minimal standards of competency just doesn’t make sense. If that were the case, no one would see a dentist, physician, mechanic, lawyer, or teacher as a result of an isolated instance of an incompetent practitioner. One should check the section on ethical violations on the BACB website if there is a question about an individuals status in the field.”
My comment:

Well, let’s take a look at how that Board Certification for ABA happens shall we?

oregonspeechandhearing.org/Archives/Ethical1.asp

“In the State of Oregon there are only two “board certified” analysts (BCABA).”

“Board certification and graduate programs in Applied Behavioral Analysis do not include coursework in normal language development, language disorders, articulation/phonological analysis, stuttering disorders, oral motor speech disorders or augmentative communication. One behavioral analyst I work with states that the majority of her knowledge (which is admirable) comes from purchasing materials and resources from our field and her own continuing education experiences. When asked why speech and language coursework is not included in their training programs given their interest in creating intervention programs in these areas she answered, “We view speech and language exclusively as a behavior. We are perfectly qualified to correct behaviors.”

Would you want any such -untrained- “Board Certified Professional” near your kid? I certainly would not. The qualifications that Board Certified ABA practitioners don’t have are precisely the ones that are very effective in improving speech and communication in autistics.

I have a problem, also, I suppose with the founder of ABA and how he trained his followers to treat autistics:

http://www.neurodiversity.com/library_chance_1974.html

“After you hit a child, you can’t just get up and leave him; you are hooked to that kid”

O. Ivar Lovaas Interview With Paul Chance
Psychology Today, 1974

Of autistics, he says …

“Lovaas: Yes. They have tantrums, and believe me they are monsters, little monsters. And they spend a lot of time in repetitive behaviors that we call self-stimulatory behaviors. For example, they rock themselves back and forth or they spin around in a circle. All kids have tantrums and engage in self-stimulatory behaviors, but with autistic kids it is extreme; they can do it for hours. Before you can get very far with developing normal social behaviors, you have to eliminate these aberrant behaviors. Some of them will bite other people or injure themselves. You can’t teach a child to speak if he is injuring himself or biting his teacher. They don’t bite their teachers very often in our clinic.

“Chance: How do you get rid of behaviors like that ? biting a teacher?

“Lovaas: Spank them, and spank them good. They bite you and you just turn them over your knee and give them one good whack on the rear and that pretty well does it. This is what we do best; we are very good at controlling these kinds of behaviors.”

This is the man who founded the ABA discipline and for which The Lovaas institute is named after.

The “PhD, BCBA” you have are quite impressive, but you might want to educate yourself in the area of genetics. The autistic genome, according to Dr. Scherer and Szatmari, cannot be altered one iota via behavioral therapy. Cognitive therapy tends to work better.

July 8, 2008 at 12:45 pm
(23) Kenneth F. Reeve, PhD, BCBA says:

Lisa, (Just as an aside, thank you for providing a forum to discuss these important issues)
Lisa says: “I think one problem we run into when we speak of “ABA” is that “ABA” is not consistent across the board. Discrete trials is not the same treatment as, say, ABA in a naturalistic setting.”
True, but done properly, you would never run into such a problem. If a young child were in a school dedicated for children with autism, for example, he or she would learn how to interact with peers, play during leisure time, use the toilet at school, have lunch, learn writing, cutting, drawing, math, reading, put on his or her coat. Note that only some of these learning situations would involve discrete trial. At home the same child would work on enjoying outings in the community, going to restaurants, self-care skills, chores, playing with siblings, etc. The skills to be learned would be developed with the child’s parents while considering the developmental level of that child. ABA is only consistent in that there are many research studies supporting effective ways to teach these skills—some are discrete trial but many dozens of other techniques are not.
Lisa says: “I’m curious, therefore, about the studies you cite. Is there an effort made in those studies (so far as you know) to ensure that the actual program provided is similar across the board?”
Across studies, there will be some difference in implementation since the learning needs of each child are different. This would be the case, of course, in an evaluation of any intervention.
Lisa says: “Quite frankly, it’s hard to believe that kids who receive 40 hours a week of straight discrete trials can then go on to function comfortably and successfully in a typical classroom. After all – they’ve never BEEN in a typical classroom!”
Again, this would be true if it were the case, but it is not. Children who have learned sufficient social, language, and academic skills who are good candidates to transition into a typical a classroom are gradually brought into that environment and are “shadowed” by a therapist/teacher. One credo of ABA is to “teach for the next setting” meaning if a child is likely to transition then we need to teach the skills that will allow for success in that environment.
Lisa also says: “On the other hand, I can well imagine that kids who receive 1:1 ABA in a whole range of settings (including groups with typically-developing kids) might do very well.”
You’ve hit it right on the head. I think you’ve just characterized what I would call a good ABA model. If consumers see something other than this in what a therapist is calling “ABA therapy” then they are not getting the real deal.

July 8, 2008 at 1:13 pm
(24) Thomas D. Taylor says:

One further comment…

I don’t wish to discourage anyone from trying to assist autistics to reach their full potential.

However, now that doctors are becoming more aware of autism and autistic spectrum disorders, more and more people are being diagnosed with autism.

Because of this, there are more and more providers entering the arena who claim to be able to “treat” or “cure” autism and it is worthwhile for parents and caregivers of autistics and autistics themselves to review these providers and their claims carefully.

One thing that many of these providers had failed to anticipate is that many of the more capable of autistics who have been subjected to these supposed treatments and cures have grown up now, or are growing up. Knowing full well that their situations, dispositions, and autistic tendencies have not improved significantly for having undergone these kinds of treatments, they are now banding together to examine – and call for an examination of- these treatments and cures to test and/or call into question their validity.

In the future, we can expect that there will come a time when the complete autistic genome will be mapped, and physicians will be able to re-define the definitions of autistic spectrum disorders in the ICD and the forthcoming DSM V based on the genetic map of the autistic genome.

Those thought to be autistic can then be genetically tests for the disorder.

At that time, it is a good bet that many of the treatments and cures currently in existence for the purposes of “treating” and “curing” autism will be scrapped.

I want to clarify something I mentioned in a previous post.

One cannot change a gene or genes behaviorally or cognitively. Though studies have shown that genomes within an individual change over the course of a lifetime, these changes are comparatively slight. For one to treat autism would require a massive genetic manipulation. In fact, the only things known to radically alter a genome are toxins that degrade it, and these toxins must occur in massive dosage – such as surviving radiation from an atomic bomb blast at close range for example.

Yet some things WILL assist autistics in helping themselves, and the most likely of these therapeutically speaking is cognitive therapy in which autistics are taught coping mechanisms, survival techniques, etc. When they are reasoned with, in other words.

Alternatively, one COULD indeed use aversives, negative and positive reinforcement, etc., to try and change behaviors…but to what end. How much does a lab rat actually know and understand about WHY the behaviors must be changed?

And how much does the physician who is trying to change these lab rats understand about the reasons behind the behaviors that are being changed?

Let’s look at stimming. If an autistic has hyper and hypo sensitivities and syneasthetic abilities, it means he or she may experience sensations at a measurement far in excess of what the average person does, and they may experience a sensation but not be able to identify that sensation until a few seconds after it has occured. Additionally, if these sensations are mixed into a sensation that a non-autistic doctor has never experienced (syneasthetic) then the doctor cannot fathom whether the “treatment” of the resultant behaviors are appropriate or not.

One must keep in mind that all of society works unconsciously against autistics. There is now a “green” movement to replace incandescent bulbs with flourescents. Autistics are reporting increased irritability as the result of the stroboscopic effects and “humming” of these lights despite the fact that manufacturers of these lights insist that the registered effects are quite impossible to detect.

Is this some mass hysteria or group hallucination by autistics? I believe that is rather doubtful.

Now imagine an autistic being told by a parent or a doctor that if there were a cure for autism, then the autistic could be cured and would not have to endure the unpleasant sensations of flourescent lights. It’s quite absurd. Just change the bulbs.

The old argument that doctors and therapists use that high functioning autistics, people with Asperger Syndrome, and PDD-NOS are within range of doing for themselves while severely autistic individuals are in dire straights is very much untrue.

Amanada Baggs serves as the best example of this. When given a computer keyboard with a voice synthesizer, this woman, previously taken to be a blithering, stimming idiot by those who saw her, is now one of the most active of autistic activists, telling all who would listen WHY she behaves the way she does and how she does not want to be treated or cured, though, like ALL autistics, she believes that for those who want assistance, assistance should be available.

The problem that is encountered is that people only want to provide assistance on their own terms, as if autistics do not and should not have any say in their own affairs. And then of course you have predatory purveyors of cures who convince parents and caregivers that they know better than anyone what autistics want and need.

My point is that autistics are now challenging directly the organizations that tout and promote questionable treatments and supposed cures, and they are calling for these organizations to be regulated by the government.

The Dore group went belly-up in Autralia recently, making off with millions of dollars paid by hopeful parents, and with services unrendered.

http://www.news.com.au/perthnow/story/0,21598,23881717-948,00.html

“ADHD help firm goes bust owing $1 million”

June 17, 2008 08:21pm

“AN Australian company which sold exercise programs to help people with learning difficulties has gone into liquidation owing creditors more than $1 million.

“The Dore Group promoted drug-free products as being able to assist with a range of neurological conditions including dyslexia, dyspraxia, ADD and ADHD, and Asperger’s syndrome.

“The company’s liquidator today said the firm would be referred to the corporate watchdog and out-of-pocket clients were unlikely to get any money back.

“The Dore Group went into voluntary administration in May, terminating employment contracts with 128 workers across Australia.”

As we can see from the previous posts, people are now beginning to question ABA providers…

That article also says:

oregonspeechandhearing.org/Archives/Ethical1.asp

“Given strict legal definitions some may argue that ABA teams members are practicing Speech-Language Pathology without a license. For this reason many Speech-Language Pathologists choose not to enter into a co-treatment relationship with ABA “therapist” as we routinely do with physical, occupational therapists, and special education teachers for fear this practice be interpreted as “unprofessional conduct.”

Regarding “Audio Integration Training”

http://www.researchautism.net/interventionitem.ikml?print&ra=4&infolevel=4

“We do not believe that AIT is helpful in improving symptoms of autism, although it may be of limited use in helping with sensory problems, such as hypercusis.”

Regarding Chelation therapy:
http://www.researchautism.net/interventionitem.ikml?ra=25&infolevel=4

“Different chelating agents have different adverse effects but some can

-remove essential minerals and vitamins from the body e.g. zinc and magnesium.

-may worsen mercury poisoning by spreading it to other tissues.

-cause an explosion of bacteria and pathological fungal growth

-cause nausea, diarrhoea, anorexia, flatulence, fatigue, irritability, sleep disturbances, macular-papular skin rash, allergic reactions

-make autistic symptoms worse in some people e.g. leading to a regression in language and behaviour

“More seriously some chelating agents can also

-cause bone-marrow suppression, which can lead to neutropenia and thrombocytopenia, which in turn can affect blood clotting and blood immune response to infections and other toxins.

-cause liver and kidney damage

-cause toxic epidermal necrolysis or erythema multiforme

“Some chelating agents, such as some commercially available brands of chlorella, may already have high levels of mercury in them when bought because of the way in which they are produced.

“One five year old child reportedly died from hypocalcaemia after receiving edetate disodium instead of edetate calcium disodium.

“Contraindications

“Chelation should not be used with people who have liver or kidney problems.

Regarding gluten free diets:

http://www.mayoclinic.com/health/autism-treatment/AN01519

“Proponents of restrictive diets believe that casein, a protein found in dairy products, and gluten, a protein found in many grains, affect brain development and behavior, causing autism in some children. However, there’s no scientific evidence that this is true or that restricting these foods improves autism. Furthermore, restrictive diets can result in nutritional deficiencies in growing children.”

Regarding Hyperbaric Oxegen Therapy:

northjersey.com/page.php?qstr=eXJpcnk3ZjczN2Y3dnFlZUVFeXk2MTAmZmdiZWw3Zjd2cWVlRUV5eTY4NjIwMTAmeXJpcnk3ZjcxN2Y3dnFlZUVFeXk1

“As far as what exactly it does in brain, based on everything we know about autism, I do not believe (HBOT) could possibly help,” said Dr. Leonid Topper, a pediatric neurologist with Pediatric Neurology Associates in Morristown.

I could go on and on about all the different organizations and methods of treatments that are being called into question.

My OPINION is that people ought to consider the ethics of what they are doing to autistics in the name of supposedly “treating” them.

My OPINION is that desparate parents seek desparate measures.

My EXPERIENCE is that many who offer treatments are either in it for the money, or are else poorly informed about the science that disproves the treatments they administer.

We will see more scruitiny of treatment methods coming into play now that government is beginning to mandate that insurance companies pay for the treatment of autistics. You can bet that insurance companies will either try to reduce the costs of these treatments, or see to the elimination of quackery and fraud.

That will put an end to this nonsense.

What do I propose as a “treatment”? I think people need to look at autism honestly and fairly and begin to see autistics as people rather than “emotional cripples”. I think educational and vocational training needs to be put in place for them, and I think companies should be compelled to hire those who are capable of working.

While I do believe that those who seek treatment ought to get what they want, I believe the choice is theirs. And yes, i am aware of the more extreme cases of autism and that many autistics seem incapable of communicating their needs. Yet there are ways to reach these people. I have seen that as well.

July 8, 2008 at 1:16 pm
(25) Kenneth F. Reeve, PhD, BCBA says:

Thomas D. Taylor says: “Well, let’s take a look at how that Board Certification for ABA happens shall we? oregonspeechandhearing.org/Archives/Ethical1.asp”

I am not sure why you are referencing this website which has nothing to do with certification in behavior analysis. If consumers are interested in certification in behavior analysis, they should look at the Behavior Analyst Certification Board website at http://www.bacb.com.
Thomas D. Taylor says: “Board certification and graduate programs in Applied Behavioral Analysis do not include coursework in normal language development, language disorders, articulation/phonological analysis, stuttering disorders, oral motor speech disorders or augmentative communication.”

Mine did. I took coursework in ABA, traditional cognitive developmental classes, language development and language disorders, etc. I always recommend a broad array of fields of study in the helping professions to young professionals. You might be confusing the fact that the courses you mentioned are not required to become board certified. Consumers, however, should always ask what additional academic training an individual has had. The more the better!

Thomas D. Taylor says: “When asked why speech and language coursework is not included in their training programs given their interest in creating intervention programs in these areas she answered, “We view speech and language exclusively as a behavior. We are perfectly qualified to correct behaviors.”
This is only true if the individual receives hands-on training during their clinical training. Many behavior analysts do, in fact, learn how to effectively teach various language/speech skills.

Thomas D. Taylor says: “The qualifications that Board Certified ABA practitioners don’t have are precisely the ones that are very effective in improving speech and communication in autistics.”
Behavior analysts collect data to determine whether their interventions are effective. If a behavior analyst is working on a speech issue with a child and it is not working, it is the obligation of that person to ask for consultation from a more qualified practitioner—sometimes this is another behavior analyst with good skills in this area while sometimes it is a speech therapist. To make a blanket statement that behavior analysts in general do not have qualifications in teaching language skills is simply wrong. Some are well trained while some still need more training.

Thomas D. Taylor says: “I have a problem, also, I suppose with the founder of ABA and how he trained his followers to treat autistics”

So do I, my friend. To be honest, the technology of the field of ABA was pretty primitive in the 1960s and 1970s. If you read your parenting books of the time, spanking was ridiculously recommended to stop all sorts of behavior for all children, typical and otherwise. We all now know better. Hitting a child is outright wrong. Period. I do not condone what Lovaas did, nor do any behavior analysts I am aware of. And just for the record, Lovaas was in no way the “founder” of ABA. A number of professionals began to apply principles of learning to individuals with severe developmental disabilities in the early 1960s. Often, these were institutionalized individuals who the rest of the world had given up on. People were taught rudimentary eating and self-care skills when they had none before. As these successes became published in research journals, individuals who were implementing these techniques began to think about what the “applied” part in ABA actually meant. This led to the Journal of Applied Behavior Analysis which began in 1968. It is available online if you Google the journal’s name.

Thomas D. Taylor says: “you might want to educate yourself in the area of genetics. The autistic genome, according to Dr. Scherer and Szatmari, cannot be altered one iota via behavioral therapy. Cognitive therapy tends to work better.”

I have a smattering of training in genetics but I am certainly no expert in that area. Nonetheless, might I correct you? A “genome” is the entirety of genetic material contained in the DNA of an individual. Of course it cannot be altered by behavioral therapy. Our genetic material cannot be altered by anything we learn. It can only be altered by certain medical or biological processes. Cognitive therapy can no more alter a genome than can any other “educational” therapy. What is your point here?

July 8, 2008 at 1:41 pm
(26) PSUMom says:

My son was diagnosed at 3 years old with PDD-NOS, but has had speech and physical therapy since he was 18 months. I’ve never paid a penny for any of his services. They are all covered by Medical Assistance through the state of PA. I don’t qualify for medical assistance, but he does due to his disability. Now he is in a program that addresses his social delays, and we are amazed at how well he is doing. No one else can guess he has Autism. Parents need to go to their state social agencies and find out how to help their kids, and then learn as much as they can about ASD and advocate for their child.

July 8, 2008 at 1:53 pm
(27) Thomas D. Taylor says:

Just wanted to address this point:

The article Thomas D. Taylor quoted says: “The qualifications that Board Certified ABA practitioners don’t have are precisely the ones that are very effective in improving speech and communication in autistics.”

You said:

“Behavior analysts collect data to determine whether their interventions are effective.”

I believe the term you are more specifically looking for is this “Behavior analysts collect data to determine whether their interventions elicit the desired response.”

No individual will perfrom for another on demand if the performance required goes against their instincts, morals, ethics, or mores.

One can plead with the individual to change.

If the individual does not heed the pleading, once can nudge and push the individual through coaxing, pursuading, and encouraging.

If the individual does not heed the coaxing, pursuading, and encouraging, then the individual can be pursuaded through positive reinforcement, negative reinforcement, the introduction of an aversive stimulus.

If the individual does not respond to positive or negative reinforcement or the introduction of an aversive stimulus the person can be punished.

ABA cycles through the various levels, and one must indeed acknowledge that these techniques are used everywhere in various forms. By parents, by schools, and by caregivers.

But one must keep in mind that autism is not a behavioral probelm. It is a pervasive developmental disorder in which many of the behaviors an autistic presents with are -left unchecked – perfectly natural.

We change an autistic’s behaviors because WE don’t like them. What are the ethics of that?

You are an adult. Perhaps you lick your fingers after eating a chicken leg. What are the ethics of me smearing an offensive and bitter tasting substance on your fingers for volating etiquette?

Most of the behaviors that people try to discourage in autistics are natural and harmless, and are the outward manifestation of inner rage. Autistics stim less when they areremoved from stressful situations. Headbanging ceases in those with the more severe forms when they are in an environment which they can control.

As I have stated, short of genetic manipulation, one cannot change an autistic. Changing their behavior won’t change their autism, just like changing a person’s behavior won’t change their eye color. Further, a colored contact lens for the eye is not a “treatment” or “cure” for eye color, just as most “treatments” for autism don’t work either.

At any rate, what behavioral therapy is in pertenance to autistics is a Skinner Box in which the autistic can be subjected to any sort of humiliation under the guise of treatment, and the more humiliating the treatment the more an autistic will respond favorably to avoid that treatment.

But ASK any individual who has endured it, and they will tell you that they did it to comply, but when they were alone and unobserved, the discouraged behaviors came out manifold and worse than previous.

I have 9 forums for Aspies and I work with autistics on a personal level. This is first hand knowledge. It is the other side of your coin.

Despite your credentials, it cannot change the fact that the therapy does not work in the end, therefore it is simply highway robbery to mistreat these people for years and collect funds for it whilst preying on parents’ and caregivers’ fears when the end result is an autistic is less inclined to respect authority, MORE inclined to indulge oneself in the behaviors that were previously discouraged and supposedly treated away, and an autistic with an increased level of poor self-esteem – and one who is less likely to be self-sufficient, but more likely to be on the government dole.

My entire life is built around reversing the emotional and metal trauma caused by ABA and iother treatments.

“To make a blanket statement that behavior analysts in general do not have qualifications in teaching language skills is simply wrong.”

Not in the state of Oregon.

http://oregonspeechandhearing.org/Archives/Ethical1.asp

“Board certification and graduate programs in Applied Behavioral Analysis do not include coursework in normal language development, language disorders, articulation/phonological analysis, stuttering disorders, oral motor speech disorders or augmentative communication.”

“Oregon law, however, clearly prohibits assisting or permitting any person to practice speech-language pathology without a license.”

“Unlike a nanny or other paid caregiver, ABA “therapists” are being paid for is to correct speech. Therefore the speech-language pathologist would technically be in violation of state law and on shaky ground with regard to ASHA standards.”

Because no ABA therapist in Oregon is trained in this area, they are legally prohibited from practicing such in Oregon. Yet they do.

Illegally.

Should we trust our children to the likes of those who have no ethical qualms about breaking the law?

What other ethics do such practitioners espouse?

“The Oregon Speech Language Association Board of Directors has requested that these issues be brought to the attention of the Ethics Committee, Oregon Speech-Language Pathology Health Related Services Licensing Board and the Ethics Director of the American Speech-Language Hearing Association.”

Perhaps ABA practitioners will be outed and fined as a result.

“Some are well trained while some still need more training.”

Agreed.

Your question at the end of your last post I addressed in a subsequent post.

July 8, 2008 at 1:59 pm
(28) autism says:

Ken, in your last you cite: Lisa also says: “On the other hand, I can well imagine that kids who receive 1:1 ABA in a whole range of settings (including groups with typically-developing kids) might do very well.”

and state:

You’ve hit it right on the head. I think you’ve just characterized what I would call a good ABA model. If consumers see something other than this in what a therapist is calling “ABA therapy” then they are not getting the real deal.

I really don’t think the model you describe in your comments is typical. In fact, I think it’s the ideal. when it happens – and when it’s supported by the district financially, morally, and so forth – I’m sure it’s fantastic. Reality, however, intervenes far too often with limits on training, access, scheduling, acceptance, opportunities…

Bottom line: I’m a homeschooling parent in part because the supports available for my son, while they looked good on paper, wound up keeping him segregated and poorly educated. Some of the therapists were terrific; many were not. We parents don’t always have the control we’d like to have over institutions’ policies and hiring practices!

Lisa (autism guide)

July 8, 2008 at 4:34 pm
(29) Sandy says:

Kenneth F. Reeve, PhD, BCBA says~ just as there’s so called bad doctors, yes, there still is bad ABA therapists and they are not all doing the same treatment plans with the child as another either or least not all of them are. Many out there are not fully trained and offer parents a lower rate, I’ve seen it many times. The certification did come as a result of no consistent treatment plan and people where out right abusing the child. Also, any time even now on TV when ABA is shown, ever look at them and what they’re doing?

As for recovery, I never spoke or mentioned such a thing. Interesting that ABA is now claiming recovery too. And because all kids are different, my child only having speech, O.T (which private insurance did pay for) and RDI later from me, he has shown substantial improvements. No, he’s not recovered nor do I ever expect him to be and he has never had a once of ABA. Are you stating them that ABA therapists are speech pathologists and occupational therapists as well?

“Certification was developed so that parents and school districts would have some indicator of quality of a person’s training.” As long as you continue to lump education into it, insurance is never going to cover it.

July 8, 2008 at 5:05 pm
(30) Thomas D. Taylor says:

Sandy asked of Kenneth: “Are you stating them that ABA therapists are speech pathologists and occupational therapists as well?”

They are behaviorial psychologists. As we read here…

louiswynne.com/index.php/why-behavioral-approaches-continue-to-fail-a-review-of-sidmans-coercion-and-its-fallout/

“The cardinal principle of applied behavior analysis is that all behavior is controlled by contingencies in the environment. These contingencies can either be naturally occurring or arranged by one person to control the behavior of another.”

The faults with ABA are cited later on in her article:

“Applied behavior analysts approach all unwanted behaviors as the product of unspecified positive contingencies which are not investigated and verified before new contingencies are arranged and imposed on the person in question. There is nothing in the applied behavior analytic manual of operations which suggests that the person’s history, not only of positive consequences but also of trauma and the family values and rules regarding how such trauma are to be dealt with, should be examined before anything else is done.”

“Applied behavior analysis begins consistently, as Sidman’s discussion demonstrates, with the experimental paradigm of a rat in an operant chamber. (Much of B.F. Skinner’s experimental work was actually done with pigeons, but the problem remains the same: neither of these species talks.) I argue that the rat analogy prevents behavior analysts from considering the language of the so-called mentally ill. It is not so much the conduct of a person that gets him/her labeled paranoid schizophrenic, but the sorts of things that he/she says.”

“In their enthusiasm to implement their techniques, applied behavior analysts seem at the very least to have put patient rights on the back burner. The issue is all the more poignant because people who are desperate, either for financial reasons as in the case of the Air Force subjects, or because their child behaves in strange and distressing ways, as in, for example, autism, will sign their consent to almost any intervention.”

July 8, 2008 at 5:56 pm
(31) Sandy says:

Thomas D. Taylor~ I know that ABA therapists are not speech pathologists not occupational therapists. I stated that all kids can benefit from speech and OT. Kenneth said: “According to whom?” which leads me to wonder if one thinks ABA is the only intervention one should have who has autism and some what disregarding the importance of having speech and O.T.

I have met many parents whose children only have speech and O.T and never had ABA and yes, those children did progress. any study out there as well will not factor in that children all progress at different rates and many other things can contribute to this progress other than ABA.

There is also the question of ‘Behavioral’ when it comes to the child with autism. Behavioral of course does not cover speech nor O.T/ sensory issues. One of the main reasons I did not want my child to have ABA is because they do positive reinforcements, mainly being food or candy. What happens as the child get’s older? the rewards get bigger? I did not want my child to unnaturally associate not doing a certain behavior to food or a treat or a reward at all other than verbal ‘yea’ which is the natural response. I wanted my child to understand why not to have these behaviors and if he had to, there was a time and place for it. Which I might add, I achieved this outcome via RDI which goes beyond repetitively being forced to do something; it teaches the ‘why’ of doing it or not doing it. So we have repetitive words and actions, and other things. He has autism so yes, he’s going to have these things but we have narrowed them down to most of them in the home than else where.

There is also a reason for some behaviors with a child with autism. It does for many have to do with genetics/ wiring sort to speak, and it has very much to do with acceptance that so many speak about. All you need is a few Aspies to join in on this topic of ABA or go read a few sites.

Autism is about a different perception of the world around them and the use of the 5 or in some cases 6 or 7 senses. Some of these things will never change for my child, it is something he will have to deal with as well as those around him. When I whisper in my son’s ear, he thinks his funny bone is on his side near his hip. It tickles him there. He knows when some one is behind him because the back of his neck feels funny. He is a literal thinker and has little imagination to speak of, which makes academics hard. ABA is not going to address those issues nor teach it. All ABA is really doing is getting a child to speak from repetitively demand that they do speak, repetitively demand they do not do certain behaviors. Does that make the child recovered? Functional?

July 8, 2008 at 5:57 pm
(32) Raven says:

“[quote] At least half a dozen peer-reviewed studies in scientific journals have demonstrated that most children in these studies have either recovered [from autism] or made substantial improvements [end quote].”

Kenneth F. Reeve, PhD, BCBA

**********************************************

ONCE UPON A TIME … A TRUE HORROR STORY

Way back in 1971, autism was distinguished from schizophrenia (Kolvin, I. ‘Studies in Childhood Psychoses: Diagnostic Criteria
and Classification. British Journal of Psychiatry, 118, 381-384).

However, way back further in the 1940s and 1950s there was an alleged explosion of childhood schizophrenia just like we are
hearing about an alleged explosion of autism. It’s questionable whether there really is an epidemic to the degree that authorities
are claiming or if it’s nothing more than just a case of better diagnoses.

The early research that lead to the creation of ABA is found in the research done in the 1940s, where researchers determined that
classic conditioning that had been deployed on “normal and subnormal” humans proved that “subnormal” children formed conditioned responses to shock faster than “normal” children did. Up until then, operant conditioning had only been tested on animals.

In fact, Dr. P.R. Fuller published in the American Journal of Psychology in 1949 what is considered to be a seminal research paper
entitled “Operant conditioning of a vegetative human organism.”.

Fuller wrote about an experiment he did on a minor whose disability is never identified and whose medical history is unknown to Dr.
Fuller. Fuller started by depriving his study subject — a real human being — of food for 15 hours after which time, a syringe of
warm milk-sugar solution was squirted into the corner of S’s mouth. This was the reinforcer. A bit of this solution was given to the subject each time he raised his right arm.

Eventually, the subject was conditioned to such a degree that he would raise his right arm 19 times in a 16 minute period in order to
receive the milk-sugar solution. After 16 minutes, the subject was exhausted and fell asleep. The following morning, he raised his
right arm and opened his mouth simultaneously. He always only ever raised the right arm.

The test was declared a great success and the he proceeded to extinguishes the subject’s response by removing the food reinforcer over a period of 70 minutes, after which time the subject stopped raising his right arm.

Yes, I know this was back as the 1950s were about to be ushered in, but the basis for ABA has its roots in these sorts of experiments
that dehumanize people in exchange for complete compliance without question.

Dr. Ivar Lovaas,considered by professionals the world over to be the “father”of ABA, created his ‘therapy’ based on the concept that autistics are lesser beings who are more apt to be lumped in with stupid animals than with humanity. Here are some comments Dr. Lovaas has made with regards to autistics and his beloved ABA therapy.

“You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense—they have
hair, a nose and a mouth—but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.” (Ivar Lovaas,
1974)

“In any case, what one usually sees when first meeting an autistic child who is 2, 3, or even 10 years of age is a child who has all
the external physical characteristics of a normal child—that is, he has hair, and he has eyes and he has a nose, and he may be dressed
in a shirt and trousers—but who really has no behaviors that one can single out as distinctively `human’. The major job then, for a therapist—whether he’s behaviorally oriented or not—would seem to be a very intriguing and significant one, namely, the creation or construction of a truly human behavioral repertoire where none
exists.” (Ivar Lovaas, 1976)

Those are pretty disgusting comments to make about a child with autism.

He’s still around, Dr. Lovaas, and his method of ABA is the method to which professionals refer when they speak of ABA. They do not mean TEACCH, also known as the Schopler Method of ABA, or DIR, also known as the Greenspan Method of ABA.

When people refer to ABA they mean the LOVAAS Method of ABA.

That being said, it should be noted that even Lovaas stated as early as 1987 that the word “recover” was incorrect and as such, the term was not used in any of his subsequent research. In other words, even Lovaas realizes that one does not “recover” from Autism and one cannot be “cured” of Autism by way of the Lovaas Method of ABA.

For any professional to claim that they can “recover” or “cure” an Autistic by way of ABA is to knowingly sell false hope to desperate and devastated parents who are overwhelmed with everything associated with having a child with Autism.

Kenneth, please post your list of “half a dozen peer-reviewed studies in scientific journals” that clearly demonstrate “recovery” from Autism is due to ABA therapy — either directly or indirectly, alone or in conjunction with other therapies — so others can read these reports.

Thomas D. Taylor has provided a number of excellent references that readers to this message board can access for themselves.

July 8, 2008 at 6:10 pm
(33) Raven says:

Dr. Peter Szatmari, currently the Head of Child Psychiatry at McMaster Chodoake in Hamilton (ON) in Canada, led a research study and published his findings in 1989. This is the same Dr. Peter Szatmari who, along with Dr. Stephen Scherer, was lead researcher in the Autism Genome Project research study that included 137 medical scientists and researchers in 50 medical centres in 9 countries with 1,600 families where at least one child was diagnosed with Autism.

In other words, Dr. Szatmari is not a flash-in-the-pan medical professional when it comes to Autism; he has devoted much of his energy towards unraveling the ‘mystery’ of Autism Spectrum Disorders.

Dr. Lovaas had previously published information that the best outcome that could be expected for an autistic on the spectrum was an average IQ of just under 70 (mental retardation).

Interestingly enough, the subjects in Dr. Szatmari’s study were all born before 1970 and had IQs between 68 and 110. Forty-two percent had university degrees and 7% were community college graduates. This represented a higher percentage of university graduates among autistics than in the NT population.

Half of the autistics in Dr. Szatmaris’ study lived completely independently while only 30% required minimal assistance in order to live independently. Most of the subjects were working (full time employment) or students (full time).

Only 5% required constant assistance and the balance required varying degrees of assistance in order to live independently.

Most of the subjects involved in the study were working or post-secondary school students.

What was most remarkable about this study was the fact that not one of these persons had been subjected to the Lovaas (ABA) Autism Treatment as the treatment had not yet been marketed when these autistics were children.

The mistaken yet very popular notion that individuals with Autism cannot learn without ABA is insulting to individuals with Autism as well as to their family. I do not mean it is only insulting to those with High Functioning Autism, PDD-NOS or Asperger Syndrome but to ALL individuals with Autism.

An ever increasing number of parents view ABA as being abusive, where children are treated like dogs to respond to Pavlovian responses and parents are tricked by professionals into believing that faking normal through forced compliance is a good thing.

And yes, Lovaas continues to hold his diminishing attitudes towards individuals with Autism as evidenced by his treatment of, and his comments regarding, individuals with Autism as late as studies published in 2005.

July 8, 2008 at 6:28 pm
(34) Thomas D. Taylor says:

Raven stated:

“Dr. Lovaas had previously published information that the best outcome that could be expected for an autistic on the spectrum was an average IQ of just under 70 (mental retardation).

“Interestingly enough, the subjects in Dr. Szatmari’s study were all born before 1970 and had IQs between 68 and 110. Forty-two percent had university degrees and 7% were community college graduates. This represented a higher percentage of university graduates among autistics than in the NT population.”

On the heels of these comments, I feel it necessary to cite a recently published article which states that in an IQ test developed specifically to test autistics:

http://www.newsweek.com/id/32250

“In the Raven’s Progressive Matrices test, they got brief instructions, then went off on their own to analyze three-by-three arrays of geometric designs, with one missing, and choose (from six or eight possibilities) the design that belonged in the empty place. The disparity in scores was striking. One autistic child’s Wechsler result meant he was mentally retarded (an IQ below 70); his Raven’s put him in the 94th percentile. Overall, the autistics (all had full-blown autism, not Asperger’s) scored around the 30th percentile on the Wechsler, which corresponds to “low average” IQ. But they averaged in the 56th percentile on the Raven’s. Not a single autistic child scored in the “high intelligence” range on the Wechsler; on the Raven’s, one third did. Healthy children showed no such disparity.”

The revamping of IQ tests for a particular segment of the population is not unethical or unscientific. Cultural variances are now being taken into account in many IQ test revisions.

What is quite striking about this revision for autistics is that fully 1/3 of the autistics tested in the “high intelligence raised” which beats the standard WISC-R bell curve that represents the intelligences of the population as a whole.

In other words, the majority of the autistic AND non-autistic population – as much as 90% or more, fall into the “average range” of the WISC-R and other scales with only 2 to 5% falling in the “above average” range.

Yet the Ravens test puts 1/3 of the ENTIRE AUTISTIC POPULATION in the higher intelligence range.

My points are twofold:

1) ABA in its worst forms treats the entire autistic population like imbeciles regardless of what their intelligence is.

2) ABA in its best form fails to recognize that as many as 1/3 of their pupils are of “high intelligence” and ought not to be subjected to such demeaning treatment.

After all, would we subject non-autistics to such treatments if they were of “high intelligence.”

In light of the research you posted, Raven, ABA will be rendered obsolete soon. Autism is not only a neurological disorder. It affects the body in many ways as well as the mind. One’s physiognomy cannot be changed by behavioral therapy.

As widespread as ABA is now for use on autistics, its days are numbered. In my experience with recognized autism organizations, ABA is coming under increasing skepticism for its failure to address and take into account the new research being posted by researchers.

As popular as phrenology once was, it is now gone. ABA is heading that way also.

July 9, 2008 at 12:17 pm
(35) Kenneth F. Reeve, PhD, BCBA says:

Raven, Thomas, and Sandy,

You have offered a large number of points to address in your most recent posts, many of them quite emotional and harsh in nature. I am not sure what led to some of the name calling but I thought we were discussing these matters for the purposes of the greater good and for understanding.

It will take quite a while to address all of them so forgive me if I, or another reader, take some time to do so.

In the meantime, since Raven asked: “Kenneth, please post your list of “half a dozen peer-reviewed studies in scientific journals” that clearly demonstrate “recovery” from Autism is due to ABA therapy — either directly or indirectly, alone or in conjunction with other therapies — so others can read these reports.”

I already did in my URL from the Connecticut FEAT group in an earlier post. Please see that post. I would also like to direct readers to the reports at these links which were developed by two independent multi-disciplinary groups of professionals in autism treatment.

http://www.madsec.org/docs/ATFReport.pdf

http://www.health.state.ny.us/community/infants_children/early_intervention/autism/index.htm

I would also like to direct readers to examine the recent report by the American Academy of Pediatrics, about which Lisa had an earlier blog posting.

http://aappolicy.aappublications.org/cgi/content/full/pediatrics;120/5/1162

July 9, 2008 at 4:24 pm
(36) Hannah Zimmerman says:

clearly you guys are passionate about children with autism. When I was searching around for articles about autism I found a interesting article on the Pitch website. It is about one of the best school districts in MO being accused of abandoning its students. You may find it interesting as well, here is the link….http://www.pitch.com.

July 9, 2008 at 8:37 pm
(37) Kari says:

Raven, perhaps some research into the basic principles of ABA would alleviate some of the concerns you have mentioned.
First of all, Applied Behavior Analysis is anything but “insulting” or “abusive.” In contrast, a defining characteristic of ABA is that it is “applied” which means that ABA focuses on socially significant behaviors and is committed to treating behaviors in order to improve people’s lives. Teaching a child to request what they want rather than engaging in a self-injurious behavior or teaching a teen with high-functioning autism or Asperger’s Syndrome how to interact appropriately with their peers is kind and humane, not insulting or abusive, and serves to enrich their lives.
Furthermore, ABA does not “treat children like dogs to respond to Pavlovian responses.” While Pavlovian conditioning does have its place in psychology, ABA focuses primarily on the use of Operant conditioning, which looks at consequences that influence the future probability of the behavior. Reinforcement of appropriate behaviors, which is a positive and in no way cruel or restrictive intervention, is a large part of this. Actually, reinforcement is a part of all of our lives. Each one of us is reinforced for many behaviors in our natural environment daily. For example, you put money into a soda machine due to the history you have of that behavior being reinforced by the machine giving you a soda. Also, that paycheck that you work for is reinforcement for your labor.
Raven, you also stated that ABA is “insulting” and Thomas Taylor stated that it is “demeaning.” Perhaps you are not aware that ABA extends far beyond simply the treatment of autism. It is used in businesses through Performance Management, used to improve safety behaviors, used in Self Management to help individuals manage their own behaviors, and more. This involves populations way beyond children with autism, including people of all ages and levels of functioning.
For more reading on the basic principles of Applied Behavior Analysis, see the book “Applied Behavior Analysis” by John O. Cooper, Timothy E. Heron, and William L. Heward.

July 10, 2008 at 1:32 pm
(38) Thomas D. Taylor says:

Kari says:

“Furthermore, ABA does not “treat children like dogs to respond to Pavlovian responses.”

Tom replies:

I agree the practice of ABA is not universal, but many of the autistics I know which have been subjected to it complain that they were treated exactly as described above.

Kari says:

“Raven, you also stated that ABA is “insulting” and Thomas Taylor stated that it is “demeaning.”

Thomas:

Well, it is.

Kari says:

“Perhaps you are not aware that ABA extends far beyond simply the treatment of autism. It is used in businesses through Performance Management, used to improve safety behaviors, used in Self Management to help individuals manage their own behaviors, and more.”

Tom says:

I am aware of what it is and where it is applied. I’ve taken the psychology courses which explained it. I disagree with its use for autistics, and I gravitate more to “cognitive psychology” than behavioral. It has no place training autistics given the science that proves that the actions ABA therapists are trying to control are not willful and deliberate, but the result of physiological issues.

My professors disagreed with it, the autistics who have been subjected to it disagree with it, professionals in the autism field are beginning to disagree with it, and parents report significant abuse associated with ABA therapy.

My opinion remains unchanged.

July 10, 2008 at 1:36 pm
(39) Thomas D. Taylor says:

Hannah Zimmerman says:

“Clearly you guys are passionate about children with autism.”

Thomas says:

I an a colleague of mine have published a series of podcasts about it. The information included in them was acquired from the latest scientific research. When you speak with researchers, they will tell you there is quite a difference between what has been discovered and how those discoveries are misused for profitability by unsavory people. I think you can probably click on my name to get to them.

Hannah Zimmerman says:

“When I was searching around for articles about autism I found a interesting article on the Pitch website. It is about one of the best school districts in MO being accused of abandoning its students. You may find it interesting as well, here is the link….www.pitch.com.”

Thomas says:

Yes. There is a network of autism organizations that is following and cataloging them for future educational campaigns. I will pass this on to them.

July 10, 2008 at 2:24 pm
(40) Raven says:

Kari wrote: “Raven, perhaps some research into the basic principles of ABA would alleviate some of the concerns you have mentioned.”

I have done considerable research in the area of ABA as evidenced by the very detailed information I provided in my initial post that referenced the history of ABA.

I haven’t any concerns about ABA. I have a solid understanding of what ABA is and how it is used — and misused — in society.

Kari wrote: “Teaching a child to request what they want rather than engaging in a self-injurious behavior or teaching a teen with high-functioning autism or Asperger’s Syndrome how to interact appropriately with their peers is kind and humane, not insulting or abusive, and serves to enrich their lives.”

And then there’s ABA. It’s inappropriate to compare appropriate parenting or mentoring with abusive and insulting techniques intended to diminish the individual rather than supplement and support the individual’s unique thought process.

Kari wrote: “Each one of us is reinforced for many behaviors in our natural environment daily. For example, you put money into a soda machine due to the history you have of that behavior being reinforced by the machine giving you a soda.”

That being said, if the soda machine in question does not yield the ‘prize’ anticipated, I do not worry that a third party will then assault me with inappropriate comments or behaviours because of the malfunction. I also do not expect a third party to assault the soda machine for malfunctioning.

ABA thrives on assaulting the error in the hopes it will correct the malfunction in the future. What it does manage to do is to traumatize the individual into complying out of fear of the repercussions for not complying.

Let’s take a look, once again, at the Lovaas method of ABA …

From my previous post: “[quote] Dr. Ivar Lovaas, considered by professionals the world over to be the “father”of ABA, *CREATED HIS ‘THERAPY’ BASED ON THE CONCEPT THAT AUTISTICS ARE LESSER BEINGS WHO ARE MORE APT TO BE LUMPED IN WITH STUPID ANIMALS THAN WITH HUMANITY.* Here are some comments Dr. Lovaas has made with regards to autistics and his beloved ABA therapy.

“You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense — they have hair, a nose and a mouth — but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.” (Ivar Lovaas,
1974)

“In any case, what one usually sees when first meeting an autistic child who is 2, 3, or even 10 years of age is a child who has all the external physical characteristics of a normal child—that is, he has hair, and he has eyes and he has a nose, and he may be dressed in a shirt and trousers—but who really has no behaviors that one can single out as distinctively `human’. The major job then, for a therapist—whether he’s behaviorally oriented or not—would seem to be a very intriguing and significant one, namely, the creation or construction of a truly human behavioral repertoire where none
exists.” (Ivar Lovaas, 1976) [END QUOTE].”

I know that later on in your post, Kari, you mention that ABA is not used exclusively on Autistics, however, Dr. Lovaas created his ABA specifically for Autistics. If it has been modified for others, it does not negate the fact that ABA was initially created by Lovaas FOR use on Autistics.

Kari wrote: “Also, that paycheck that you work for is reinforcement for your labor.”

Not all of us work for employers. And not all of us are motivated by big paychecks that can then purchase big houses and big cars and big vacation plans.

Some of us are motivated by other results that are not well understood by those who are motivated, in large part, by money.

Perhaps there should be some sort of ABA-style therapy for those of us who are more altruistic than materialistic.

Then again, I would like to think that one’s individualism is prized above money and material possessions.

Kari wrote: “It is used in businesses through Performance Management, used to improve safety behaviors, used in Self Management to help individuals manage their own behaviors, and more. This involves populations way beyond children with autism, including people of all ages and levels of functioning.”

When’s the last time you saw a third party using ABA on middle or upper management where the reinforcer and deterrents were remotely similar to the reinforcers and deterrents ABA therapists use on Autistics subjected to ABA therapy?

You see, if this sort of thing did happen in businesses, those persons making use of ABA in the workplace in order to have others comply with their directions would find themselves on the receiving end of a lawsuit.

And while I understand that some integrate or modify ABA into their interactions with those who do not have Autism, Lisa Jo Rudy’s about.com site is about AUTISM, not about BUSINESS.

July 10, 2008 at 7:47 pm
(41) instructor therapist says:

I would like to clarify some statements I have been reading on this website. I work as an instructor therapist for children with autism, what I do, what Lovaas studied, is called Intensive Behavior Intervention (IBI). It is IBI that is specific to children with autism, not ABA. ABA is the study of applied behavior ananlysis and Kari is correct to state that it is applied in various fields, such as business, sports psychology, brain injury, addictions recovery, to name a few. the field of ABA in business is called Organizational Behavior Management, google it and you will learn it is all based on the field of ABA. I also reccomend people check out this link if they are interested in seeing what courses are involved in receiving an MA or PhD in behavior analysis and the diverse background that the professors apply to th field of ABA: http://www.umanitoba.ca/faculties/arts/departments/psychology/graduate/programs/aba.html

Tom, I can understand how frustrated you and others feel after having gone through IBI and it didnt work. It is intensive, and it is hard on the child, and it is not successful on every child. However, it is successfull for many children. Some children I have seen go through IBI and are now functioning just like their typical developing peers. Some children may not be functioning at the same level of their peers, but they can now get dressed, brush their teeth, feed themselves, things they could not do before IBI. The greatest success comes from a team of Instructor Therapists who are compassionate and are able to take a step back if they are pushing the child too hard. These therapists also work with Speech pathologists, OT’s and the child’s teachers to help increase the child’s ability to function at the same level as their peers.
I would also like to point out that the first thing I learned in training to become an instructor therapist is that IBI does not recover your child from autism. The goal of IBI is to get that child to function socially, cognitively amd behaviourally at the same level as their peers, not to cure them of autism.

For Raven, no not everyone works for a paycheck. When you do altruistic things, do they make you feel good afterwards? I volunteer with inner city children every saturday. I dont get paid for it. I do it because I love those children and it makes me feel good knowing that I am helping out. Those feelings of love and happiness that I get from working with children is positive reinforcement for me to do it again. When you get a mosquito bite and you put calamine lotion on it to take the itch away, that is serving as negative reinforcement.

July 10, 2008 at 7:51 pm
(42) instructor therapist says:

Let me leave you with a third example. When a baby cries and his/her mother comes to feed, that baby leanrs that crying leads to mother’s attention and feeding. It is very foolish to assume that ABA applies only to the field of autism and children with disabilities. And for the record, if I, as an instructor therapist, every did anything abusive or demeaning towards a child (and I mean treating the child as anything less than a typical child) I would be fired on the spot. Clearly you have a bias against ABA, but I reccomend you do a little more research into the field of ABA and IBI before you continue to criticize.

July 10, 2008 at 7:55 pm
(43) Instructor Therapist says:

sorry, just one more thing. Raven, you are correct Dr Szatmari is a brilliant man and doing amazing things in the field of autism. I would like to point out that as a student, I volunteered in the IBI program in Hamilton Ontario that Dr Szatmari oversees. He is not against IBI in any way.

July 11, 2008 at 4:56 pm
(44) Thomas D. Taylor says:

It was stated:

“Clearly you have a bias against ABA, but I reccomend you do a little more research into the field of ABA and IBI before you continue to criticize.”

I would not call the heavy weight of anecdotes and personal experiences of those who have undergone the therapy vs. a zero satisfaction rate among those who have undergone it as a “bias.” My opinion is based on both the science and the anecdotes of those who have undergone the therapies. Ergo no “bias” can exist unless it exists on the part of the researchers themselves or those autistics who have been “trained” or parents of those who watched their kids be “trained.”

That you would suggest that I am biased indicates that you are assuming my opinion is based on emotions or my own personal experiences, which is a prejudicial assumption. I have never endured ABA or IBI. But I have witnessed both and assisted a parent in removing her children from an ABA and IBI based program for the asking.

Having taken courses in both behavioral and cognitive therapy, I am familiar with the theories and practicum of ABA and IBI and still insist that one cannot apply the approach to treating or curing behaviors that are caused genetically. It’s like trying to prevent an allergic person from sneezing through positive and negative reinforcement, the introduction of aversives, or punishment. The very concept is absurd.

If you read the news today, you will discover an article stating that six new genes have been discovered as being responsible for autism. This in addition to the genes already discovered. Fully 15% of all autism cases are now categorized as being purely genetic in origin without an environmental trigger. The article also states that scientists are coming to believe that autism is a “customized” disorder, which means that a whole smattering of genes may be the cause in one person while there may be only a few in another. (This explains the autism spectrum).

my point: ABA and IBI are now employed in foisting a “one sized fits all” remedy to people who require a customized approach to treatment, and this customized approach will most likely be exclusively in the realm of gene therapy at some point.

In light of the published research, and research yet to be published which I know of but which the general public does NOT know of, therapies such as ABA and IBI are going to be made to look increasingly foolish and absurd as time goes on – in reference to their use with autism, at any rate.

My one concession is that IBI ALWAYS stands to work with controlling behavior problems which are PURELY psychological in nature. Other than that, it is largely useless.

July 11, 2008 at 5:17 pm
(45) Raven says:

Intructor Therapist wrote: “I would like to point out that as a student, I volunteered in the IBI program in Hamilton Ontario that Dr Szatmari oversees. He is not against IBI in any way.”

Show me where I said that Dr. Szatmari was against anything. As a brilliant researcher, it serves him well to be neutral and impartial … even as it pertains to his own research.

However, being neutral and impartial does not mean one supports a therapy or a treatment.

July 11, 2008 at 5:25 pm
(46) Raven says:

intructor therapist wrote: “It is very foolish to assume that ABA applies only to the field of autism and children with disabilities.”

You failed to comprehend what I posted previously. I did not assume — as you so foolishly did regarding my post — that ABA applies only to the field of Autism and children with disabilities.

What I pointed out is that Lisa Jo Rudy’s blog pertains specifically to Autism and as such, the treatments, therapies, strategies, et al discussed herein are directly and/or indirectly related to Autism.

I would think that as an educated person you could understand that when someone states that the because the blog pertains to Autism the statements made therein by the author as pertaining to Autism means that said comments are specifically about Autism. They may pertain indirectly to other subjects however those other subjects are not germane to the discussion at hand.

An astute student would understand that sticking to the subject material while defending one’s position in a debate is a vital cornerstone to build upon.

I don’t doubt you may have studied under Dr. Szatmari however it would serve you well to actually read what the author writes without foolishing assuming you know what the author meant but which may be nothing more than a fallacy of logic on your part.

July 11, 2008 at 5:26 pm
(47) Raven says:

intructor therapist wrote: “Clearly you have a bias against ABA, but I reccomend you do a little more research into the field of ABA and IBI before you continue to criticize.”

Clearly you have a misguided bias in favor of ABA and I recommend you do intesive research as I have into the history of ABA before you continue to support and promote its use, specifically with individuals with Autism.

July 15, 2008 at 1:30 pm
(48) Kenneth F. Reeve, PhD, BCBA says:

With regards to ABA, Thomas Taylor wrote: “I would not call the heavy weight of anecdotes and personal experiences of those who have undergone the therapy vs. a zero satisfaction rate among those who have undergone it as a “bias.”

Really? Not to be flippant, but if you examine any research methods textbook, what you describe (anecdotes and personal experience) falls under the very definition of “evidence” that scientists would call biased.

Just as you claim to have seen a “zero satisfaction rate” in individuals who have undergone ABA, I and colleagues of mine personally know of literally hundreds of individuals who have a very high level of satisfaction with ABA. My personal experiences, however, do not meet the criteria of what scientists call “evidence” and, as such, I do not use anecdotes to try to convince consumers of autism treatment to use an ABA approach. Rather, consumers should be directed to peer-reviewed research studies when it comes to ANY intervention. As a practitioner in the field, that is my obligation.

July 15, 2008 at 4:36 pm
(49) Thomas D. Taylor says:

Kenneth wrote:

“Really? Not to be flippant, but if you examine any research methods textbook, what you describe (anecdotes and personal experience) falls under the very definition of “evidence” that scientists would call biased.”

Yes, but who better to judge than the people who have actually undergone treatment and those who have known them before and after treatment?

If you have someone has unexplained fingermarks and brusies on their bodies that happened between dropping someone off at ABA treatment and picking them up afterwards…If you have someone with minor stimming issues before ABA and someone who, after ABA bangs their head against the wall, has an explosive temper, demonstrates increased behavioral problems in school, tries to stick their fingers in their eye sockets to rip out their eyes…and if in such cases all other influences remain the same, can we not attribute ABA as being the culprit, or is this conjecture? And if so, whence comes the bruises and figermarks if not from the ABA providers?

I believe that because such stories are hardly isolated, it would seem that they cannot be disregarded as anecdotal hearsay. I run forums for Aspies and HFAs. The total population of them is 800 at present. Not one of those people who has undergone ABA has anything positive to say about it, and all say the only reason they complied with their instructors was to avoid further consequence. When these people became of age, they separated and severed contact with the family members who sent them to such programs.

This is the legacy that ABA leaves, yet because it is anecdotal, it is hardly evidence in your opinion.

I personally would like to know what the payoff is for ABA, because what is happening is you are converting a kid with embarrassing behaviors into a well-behaved one in exchange for serious psychological trauma that lasts a lifetime. Often these people become more reclusive than they were to begin with and distrust other people in the same manner that freed African American slaves must have trusted white people upon being emancipated.

You said:

Just as you claim to have seen a “zero satisfaction rate” in individuals who have undergone ABA, I and colleagues of mine personally know of literally hundreds of individuals who have a very high level of satisfaction with ABA. My personal experiences, however, do not meet the criteria of what scientists call “evidence” and, as such, I do not use anecdotes to try to convince consumers of autism treatment to use an ABA approach. Rather, consumers should be directed to peer-reviewed research studies when it comes to ANY intervention. As a practitioner in the field, that is my obligation.”

I know what your obligations are. Perhaps you ought to provide a demographic of the parents of your clientelle. These are people who want to change the behaviors of their children the way they would want to change the dress on a manniquin. they do it in the name of love, but in many cases their motivation is frustration that nothing they have done thus far can change their child.

I know parents who, frustrated with the glaring lack of success of ABA, have made stunning progress with their autistic children through spending time with them, trying to understand them, homeschooling them, and accepting them the way they are.

These autistics made an effort to come out of their shells to connect with their parents and siblings because true love beats all motivators. Lovass of course believed autistics were little monsters, hollow shells to be filled up with new pre-packaged personalities. Many of the ABA therapists I have communicated with have slightly more compassion, but the same essential prejudice.

July 17, 2008 at 7:44 pm
(50) Kenneth F. Reeve, PhD, BCBA says:

Thomas said “This is the legacy that ABA leaves, yet because it is anecdotal, it is hardly evidence in your opinion.”

Since you are speaking about your experience, here is mine: the legacy that ABA has been leaving is a thousands of individuals who have learned skills that have enabled them to participate in whatever activities they choose in life. They still are genetically the same as always but they have learned to do things differently. Yes, the decision to enter into ABA therapy was decided by their parents. If this is problematic, I don’t know what to say. Parents are charged with doing what they feel is best for their children. Let’s talk facts: Parents of all children want to change the behaviors of their children. Parents want their children to learn to take care of themselves, to learn academics, to learn social skills, to learns leisure skills, to learn how to have a meaningful sex life as adults, to learn how to think in an effective manner, to learn to be happy and fulfilled, etc.

July 17, 2008 at 7:46 pm
(51) Kenneth F. Reeve, PhD, BCBA says:

Thomas said “I personally would like to know what the payoff is for ABA, because what is happening is you are converting a kid with embarrassing behaviors into a well-behaved one in exchange for serious psychological trauma that lasts a lifetime.”

Please, Thomas, this is highly charged statement that, as far as I can tell, has no objective nor empirical evidence to back it up. Again, I have as much anecdotal evidence contradicting your view as you claim to have supporting it. I am NOT denying that there are individuals who have experienced poor therapy. Let’s, however, call it that. Let’s not deride a helping profession that has positively affected thousands.

July 17, 2008 at 7:48 pm
(52) Kenneth F. Reeve, PhD, BCBA says:

Thomas said “Often these people [undergoing ABA] become more reclusive than they were to begin with and distrust other people in the same manner that freed African American slaves must have trusted white people upon being emancipated.”

You are equating undergoing ABA therapy with slavery? I think that this is a very dramatic assertion with no basis in fact.

July 18, 2008 at 1:31 am
(53) Thomas D. Taylor says:

“You are equating undergoing ABA therapy with slavery? I think that this is a very dramatic assertion with no basis in fact.”

1) Did you ever think to ask any of these autistics what THEY wanted for themselves?

2) Did what they want get overridden by YOUR judgment or their parents’ desires?

3) Have you, like other ABA therapists, physically moved their arms or legs or physically stopped their arms and legs from moving and administered an aversive stimuli or punishment if the desired response was not what you wanted?

4) Were any of these autistics prohibited from leaving the environment in which you worked with them?

5) If so, were they caught and returned?

6) There is a UN mandate that says that those with disabilities have a right to seek their own treatments or refuse those imposed on them. Do you adhere to this mandate? Are you even aware of it?

ABA therapy is oppressive and offensive to autistics.

As for evidence, one needs only tio 1) Be autistic, and 2) Attend my forums and one will see people talking about all the treatment they have gotten at the hands of ABA Therapists (Board Certified or not) and the negative results therefrom.

July 19, 2008 at 8:07 am
(54) Kenneth F. Reeve, PhD, BCBA says:

Thomas wrote: 1) Did you ever think to ask any of these autistics what THEY wanted for themselves?
Yes. Obviously the older an individual is, the more you would take this into account. If I am working with a 5-year-old who needs to learn how to urinate in a toilet, he might not now want to learn this. If I am working with a 15-year-old who might not want to learn how to skateboard, then I will ask him what he does want to learn. This is not a black and white issue. Children are expected to learn some things, whether NT or not. It seems you equate that with something unnatural. I didn’t always want to learn certain brush techniques in art class but I am now glad I did. I didn’t want to learn how to write but I am glad I did.

Thomas wrote: 2) Did what they want get overridden by YOUR judgment or their parents’ desires?
Again, this is not black and white. If a child wants to bang his head against something, his wants are overridden. Period. We adults would make that judgment. If a child wants to work on cutting with scissors or drawing, fine, whatever he wants. You make it sound as if there is some sort of dictum of mind control in ABA.

Thomas wrote: 3) Have you, like other ABA therapists, physically moved their arms or legs or physically stopped their arms and legs from moving and administered an aversive stimuli or punishment if the desired response was not what you wanted?
Let’s break this into 2 parts because the second does not follow from the first. If a child is learning to write his letters, eat with a fork, cut with scissors, then yes, there is manual guidance. As for the second, I cannot ever remember when any child was subjected to a punishment procedure for something like this. I would just manually guide the child’s hands again until he got it. I’m sure you’ll read something evil into this but this is the way I learned piano, painting, sculpting, sewing, golf, etc. It’s a pretty common way to teach a person how to do things.

Thomas wrote: 4) Were any of these autistics prohibited from leaving the environment in which you worked with them?
Yes, they were small children. This was in a school environment. If you or anyone on your forums thinks it wrong to prevent a child from running into the street, so be it.

Thomas wrote: 5) If so, were they caught and returned?
Yes. See above.

Thomas wrote: 6) There is a UN mandate that says that those with disabilities have a right to seek their own treatments or refuse those imposed on them. Do you adhere to this mandate? Are you even aware of it?
Yes. This implies that a person has autonomy. A 5-year-old does not. If a child was allowed to decide, then no one would go to the dentist, doctor, or school. All of us would be wearing diapers sitting on the couch eating donuts and watching Sesame Street. A person with autonomy does, of course, have that right. Sometimes I do like to sit on the couch and eat donuts while watching Sesame Street. I’ve moved beyond the diapers, though, fortunately.

Thomas wrote: ABA therapy is oppressive and offensive to autistics.
Glad your world is so black and white. I shudder to think how many institutions would be filled with people with severe autism who have no skills or choices in life because they weren’t “oppressed.” I’ve yet to see ANY strategy from you for helping these kids that has anything more to it than vague descriptions of “homeschooling” and “accepting them.” ABA is a field with a 40-year track record. I understand that you (and many others) disagree with it on a philosophical ground. So be it. I’ve been moved to tears many times by the people I’ve worked with who have gone on to be deliriously happy and productive. I wish they would visit your forums but obviously I cannot force them to.

Thomas wrote: As for evidence, one needs only to 1) Be autistic, and 2) Attend my forums and one will see people talking about all the treatment they have gotten at the hands of ABA Therapists (Board Certified or not) and the negative results therefrom.
I don’t doubt there are many people who were exposed to crummy therapists. Call them what they are: crummy therapists. Because of demand there are far too many people calling themselves ABA therapists that have no business doing so. If someone has violated any ethical code, and that person is Board Certified, please see http://www.bacb.com to identify how to report this person.

Thomas, I do want to thank you. I have been saying to many people in my field that the world does NOT have a good idea of what the values, goals, and ethics in ABA are. I view much of what you wrote as being mischaracterizations of ABA. The fault, for this, however, rests with the field of ABA. If more ABA people would get into these kinds of discussions, understanding would increase exponentially on both sides.

July 19, 2008 at 8:58 am
(55) autism says:

I have to agree with Ken.

As a parent (and as a former NT child)I KNOW that kids will not make good choices on their own without direction and adult intervention. In fact, they NEED that direction to learn how it interact with the world in a positive way. (Ever read “Lord of the Flies”?!)

It’s not the case that NT kids intuitively grasp everything while ASD kids don’t. NT kids need the same type of discipline, the same kind of modeling, and the same kind of rewards and consequences. Sometimes, even with all the positive modeling and teaching in the world, NT kids screw up and have to live with the consequences.

Ordinary parenting uses the basic tenets of behaviorism all the time! Today we’re a bit more enlightened (less spanking, more “time outs” for example) – but the principle is the same.

ABA, like ordinary parenting, though, can easily be abused. Just as a father may pull off his belt and beat his child for failing to walk the dog, so behavioral therapists of the past have shocked and injured autistic children for simply being autistic.

The key, IMHO, is not in the theory behind the therapy (clearly, kids need to be taught – and autistic kids may need to be taught more directly and consistently than NT kids) but in the quality of the therapist!!! (and that’s not a small issue: top ABA therapists argue that ABA is a terrific approach, but they may never have seen some of the truly crappy therapists at work.)

On the issue of hands-on teaching (placing a child in the correct position, hand-over-hand teaching, etc.) – it sure works for my son! And, to be honest, I think it works for a great many people for whom muscle memory is stronger than verbal memory.

Lisa (autism guide)

July 21, 2008 at 4:04 pm
(56) SchoolPsychUK says:

The ABA therapist all use the same studies to promote their profession (which are only a few). There have been just as many studies that show that ABA does not have any substantial effect on Autistic behaviors. I have read that they are currently conducting a large scale study in several countries including the U.S. However, it is being conducted by and at Lovass institutes/facilities. Anyone that has ever conducted research knows that data can be manipulated/changed to show whatever results you want it to show. Think about all the “studies” the tobaco industry completed that showed tobaco was not related to cancer or birth defects.
Unfortunately parents are getting misled by ABA therapist and celebrity activist.
And the ABA training programs that I’ve researched are nothing more than 4 or 5 online courses after getting your bachelors or masters in any field. And to be board certified you have to do a year working under someone thats already certified. Seriously, would you trust any other therapist or doctor that took nine months of classes and was supervised by someone that also took nine months worth of classes.

July 22, 2008 at 10:42 pm
(57) Anonymous-LH says:

The ABA company I work for as a Behavior Services Assistant conducting ABA therapy hires people who have had experience during undergrad courses or who are enrolled in the ABA grad program to conduct therapy sessions. Parents who pay for these services are paying for qualified people at all levels. Parents are paying for a qualified individual with data to verify the individual behavior plan they are suggesting has worked time and time again. ABA is in the business of changing behavior and helping individuals reach their full potential by providing services with ethically sound and qualified individuals who care to help children with Autism and other disabilities live a happy successful life.

July 22, 2008 at 10:53 pm
(58) Anonymous-LH says:

As a BSA I work with implementing the behavior plans written for each individual child. The child is given options of things they would like to do. We also use the Premack Principle which simply means the individual must complete their least desired activity before engaging in a more highly preferred activity. This principle can be used with any person who is looking for a way to organize the tasks they need to complete for the day.
ABA is not out to be punishing or restrictive. We have fun and allow the kids or individuals to enjoy learning new things, whether it is things they need to learn (eating properly) or things they want to learn (how to ride a bike, play games,etc). I agree with Ken it is our jobs as professionals in the field of ABA to spread the word on exactly what we do for individuals and leave less room for guese work!

July 23, 2008 at 8:05 pm
(59) Kenneth F. Reeve, PhD, BCBA says:

SchoolPsychUK wrote: “The ABA therapist [sic]all use the same studies to promote their profession (which are only a few).”
You need to do some reading. There are nearly a dozen group-design studies along with over 500 single-subject research studies, all peer-reviewed I might add, that support the use of ABA for autism. And it is not only behavior analysis that refers to these studies. The American Academy of Pediatrics, the NIMH, the Surgeon general, and the New York State Department of Health all note this research evidence.

SchoolPsychUK wrote: “There have been just as many studies that show that ABA does not have any substantial effect on Autistic behaviors.”
This is laughable. Reference just one that was conducted using a sound research design.

SchoolPsychUK wrote: “I have read that they are currently conducting a large scale study in several countries including the U.S. However, it is being conducted by and at Lovass institutes/facilities. Anyone that has ever conducted research knows that data can be manipulated/changed to show whatever results you want it to show.”
You are now accusing these researchers of lying and cheating. As in any peer-reviewed science, lying and cheating would have been found out long ago by replication of these studies.

SchoolPsychUK wrote: “Unfortunately parents are getting misled by ABA therapist [sic] and celebrity activist [sic].”
In what way are they getting misled? By asserting that ABA is the only intervention supported by sound research practice? And by the way, just what celebrity is it that is promoting ABA? Most discount it and promote something else like vitamins, diet, or chelation.

SchoolPsychUK wrote: “And the ABA training programs that I’ve researched are nothing more than 4 or 5 online courses after getting your bachelors or masters in any field. And to be board certified you have to do a year working under someone thats [sic] already certified. Seriously, would you trust any other therapist or doctor that took nine months of classes and was supervised by someone that also took nine months worth of classes.”
You’ve described (sort of) the minimum training that someone needs to become board certified in ABA. I always suggest to consumers that they try to engage ABA therapists with more qualifications. There are, for example, doctoral programs in behavior analysis along with individuals who have multiple years of experience. To suggest that all behavior analysts are minimally trained is completely wrong.

January 25, 2009 at 3:52 pm
(60) cjashr says:

Its really a travesty that this person thinks that the behavoiral therapist would make the 70k+ per year. The average behavioral therapist makes from $12-18/per direct service hour while their services are billed at a rate of $65-$105 per direct service hour. Absolutely incredible. Although, yes their supervisors and managers are typically MA/PhD,w/ BCBA cert, these individuals really have minimal contact w/ children. In other professions – this does make sense, but really, in order for the govn’t to pay $65-105/hr. there NEEDS to be a CERTIFIED/LICENSED therapist directly providing the treatment.

January 4, 2010 at 12:21 am
(61) Kristie says:

YES!!! cjashr is correct!!!! DING, DING DING DING@!!!!!

and Thomas in looking back at my years in my son’s ABA with unclicensed ABA persons I agree with you and my mommy gut told me it was wrong and I knew it was wrong and now my son is with licensed persons doing behavioral therapy (of which ABA is under this umbrella but not the end all be all) and things are much better. They do a variety of things like cognitive therapy etc with all CLINICALLY LICENSED PEOPLE. That’s the way to go!!!

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