Sins of Our Fathers' DNA

In the Old Testament, God said to Adam, “Have you eaten from the tree of which I commanded you that you should not eat?'” (Genesis 3:8-11).” Because of his original sin, Adam (and Eve) were cast from the Garden of Eden. They were held responsible for Adam’s misdeed.

During and after the World War II era, many social psychologists attempted to understand the massive religious and ethnic scapegoating of Jews for the economic plight of Germany following the Treaty of Versailles, resulting in the torture and murder of millions of innocent people throughout Europe. In 1941 psychologist Neal Miller and his colleagues at Yale University published an article “The Frustration-Aggression Hypothesis” proposing that human aggression is the product of a natural process emanating from thwarting the individual or group from achieving highly desired goals. People who are frustrated look for someone or something to blame, whether it has anything to do with their affliction or not.  In the 1960s other psychologists conducted a series of studies demonstrating that exposing animals, from snakes to monkeys (and even people), to painful stimulation almost invariably elicits aggression directed at nearly any nearby target, whether that object had anything to do with their pain, or not. Someone or something must be held responsible and pay for their suffering.

It should come as no surprise, parents who are experiencing anger and suffering grief because of their child’s disability, such as autism, look for someone or something to blame.  In the distant past, birth of a child with a disability was considered God’s punishment for some presumed sin based on numerous biblical references to visiting punishment upon the sons for sins of the father.  During the 18^th century in England and in the New World, punishment was directed at mothers rather than fathers, who were typically held culpable for their child’s disability.  Religious authorities and parents often believed the devil had inhabited their unborn child resulting in a physical or psychological disability, often from some presumed maternal sexual transgression.  No bleeding heart, Martin Luther recommended drowning children with disabilities to rid the devil from their midst.  Bruno Bettleheim’s attempt to censure the mothers of children with autism for their child’s condition, maintaining the destructive tradition of misdirected maternal blame.

Many of today’s parents of children with autism are not so different in that respect from those entirely innocent and blameless animals, upon whom the experimenter inflicted pain.  They lash out at someone, something, actually nearly anything, to blame for their child’s condition.  Any professional who joins them in identifying any remotely plausible source of their suffering is viewed with great favor by grieving parents who see them as legitimate targets, much like the Inquisitors in England and throughout Europe who identified witches among their midst to be imprisoned, tortured or killed. There will always be some professionals who will capitalize on parents’ suffering, offering them false targets for their anger and fabricated panaceas for their child’s condition. Those of us who point out there is no connection between the concocted "cause" and their child's autism are considered traitors or worse, for stripping away parents' guilt-expunging fantasy.   

Parents are for the moment able to believe, that at least it was not they, who were to blame.  If parents are able to believe there is an external cause for their child’s autism, they are greatly relieved they are absolved of responsibility for their child’s disability; it is comforting that they had not in some unknown way sinned.  Who among us cannot think of something, one thing, one small thing we may have done during our child’s prenatal or early perinatal period that we can imagine might have caused their condition?  There is that medicine we consumed or that extra drink at the party or working in the garden spreading pesticide, that used questionable chemicals.  Each and every one of us conjure up some small potential transgression we think we may have committed, in our deepest moments of guilt, and flagellate ourselves with psychological thorns of blame from our child’s disability.

While autism may have multiple causes and subtypes, most evidence points to genetic errors as the basis for most forms of autism. That is why, though there have been remarkable advances in genetics research on autism, such findings seem to offer limited comfort to parents, because in a convoluted way, some parents still feel responsible for the chemical DNA sequences in their eggs and spermatozoa and are not able to feel entirely blameless for their child’s autism.  We cling to sins of our father's DNA. 

That is also why, despite the fact that at least half of children with autism can now successfully achieve integration into regular education by first or second grade after intensive early behavioral intervention, many parents remain deeply distraught.  Despite their child’s enormous gains and their quality of life vastly improved, their daughter is not likely to become a successful lawyer or it is improbable their son will become a architect or doctor.  Parents, and even worse, their child, have still been cast from the Garden of Eden, so there must be some external cause to blame for that profound loss. 

So we perpetuate the errors of the Inquisitors and our ancestors’ witchcraft trials in the American colonies four centuries ago. When will parents be able to forgive themselves and stop blaming others for something neither they nor others have done?  

Autism Therapy: How Much is Enough?

A couple weeks back I posted an entry Treat or Treatment? about autism therapies. The article discussed the importance of providing demonstratively effective treatments and not wasting money, your child's time and energy on ineffective methods. This is a follow-up.

Parents approach the right amount of autism intervention as they might think about the dose of cough medicine for their child with a respiratory infection.  How many spoonsful of that pink syrup should I give my daughter on what schedule, to control the cough and so she gets better?  We specify early intervention dose in hours per week instead of spoonsful.  Parents want to know many hours per week of early intervention their children should receive, on what schedule?  They receive a variety of conflicting answers with no one to help them resolve the conflicts.  Most of the people giving advice appear to have an implicit conflict of interest.

Providers of Applied Behavior Analysis early intervention often quote the figure in the 2001 National Research Council study indicating children with autism need a minimum of 25 hours per week of one to one intensive behavioral intervention.  Other ABA providers routinely tell parents they need 30-40 hours per week, as in the 1987 Lovaas study.  Other types of therapists, such as Relationship Development Intervention® and Floortime® therapists often recommend a few hours per week, and encourage parents to implement the rest of the intervention naturalistically on their own.  Few actually conduct another 20 hours per week on their own.   Bob and Lynn Koegel who developed Pivotal Response Training®, don’t specify a certain number of hours per week, but the strategy they suggest suggests that it would involve an intensity similar to RDI® or Floortime®, i.e. 3 to 6 or 8 hours per week.

This ”intensity” question and the corresponding recommendations, seem to imply all children with autism spectrum disorders need more or less the same intensity of intervention in order to make meaningful progress in social and communication skills and reduction of stereotyped, rigid non functional routines.  That is clearly not the case, and a carefully reading of the 2001 NRC recommendations indicates that intensity must be individualized, but it isn’t clear on what basis that will be done.

At the Minnesota Early Intervention Project, we conducted a study with 27 sequentially served young children with autism spectrum disorders from about 2 to 6 years of age at time of program entry, who received from 1 to over three years of therapy ranging from 12 to 37 hours per week (average =22 hours).  All of the children exhibited improvement and 2/3rds were in regular education placements at the conclusion of treatment.  Some had no para-professional support in school and others had part time paraprofessional aides.   The children who made the greatest gains in the shortest period of time were higher functioning children who received 12-15 hours at baseline.  Treatment intensity tapered to 5 or fewer hours per week over the last three months.  All of the children in this group had received naturalistic incidental therapy and very little or no discrete trial intervention. 

I developed the Autism Intervention Responsiveness Scale (AIRS®) as a tool for deciding what type of intervention or combination of interventions would be most effective for a given child (Thompson, et.al. 2010, pages 37-9), which is accurate for a large percentage of children.  The result tells you what proportion of DTI, Naturalistic or Blended Intervention is likely to work best for a given child.

While it’s true on overall, children who receive an average of more hours as a group, show greater gains than those with 10 hours or less AS A GROUP, within those groups large individual differences mandate individualization. 

If a high functioning child with Asperger Disorder makes great gains when receiving 15 hours per week of therapy, would he also make similar gains at 25 hours per week?  He probably would.  So why provide more hours of therapy than he needs to achieve the goal?

Some parents and practitioners insist children with autism receive 35 to 45 hours per week of EIB therapy despite professionals’ judgment that their children do not require that intensity.  I have worked with parents who wanted their child to receive over 50 hours per week of therapy, believing more is better. 

Sometimes other parents whose children could very likely benefit from 30 or more hours per week of intervention at intake, based on their presenting profiles, insist their children only receive 10-12 hours per week.  They believe greater treatment intensity would be stressful, which is seldom the case when properly implemented for the appropriate child.  Studies indicate that around 75% of the gains that are going to be made for most children with autism during EIBI come in the first 12 months.  That is why beginning with 10 hours per week instead of 30 hours (if that is what the child actually needs) may very well lead to far lesser gains than could have been obtained have more appropriate intensity be used.

Here are some of the consequences of failing to individualize treatment intensity.

1. There is little evidence more hours of therapy benefits children who does not require more intensity. It’s like drug dose.  If someone needs 50mg of a medication, giving them 100mg will usually not help, and may cause side effects.  Children who need 10-15 hours per week of naturalistic intervention will often resist more hours of intensive discrete trial intervention, which has little benefit for them.  Some develop tantrums when required to participate in six hours per day of discrete trial intervention, but happily participate in fewer hours of naturalistic therapy.

2.     It is waste of money to conduct early intervention therapy with more intensity than is necessary.   The average cost difference between 15 and 35 hours per week would be approximately $50,000 per year per child.

3.     Naturalistic therapy focuses on somewhat different skills than discrete trial intervention, (e.g. choice, spontaneous social initiations and conversational language) which has implications for whether more hours of a discrete trial approach is used or fewer hours of a naturalistic approach or a blended combination, which we have used for most children.  Children with severe symptoms and mild to moderate intellectual disability often require more intensity with emphasis on basic cognitive skills, and more basic communication skills.

The second complicating factor with treatment intensity is that almost all parents of children with autism seek multiple services for their children.  There is intensity, and effective intensity.  Mom and Dad are usually told by pediatricians their child needs several therapies, and their friends strongly urge them to participate in a wide array of treatments, most of them untested.  The average number of different services per child with whom I worked at the Minnesota Early Autism Project was five per week.   At a minimum, in addition to early behavioral intervention, most children with autism also received Speech Therapy, Occupational Therapy, (sometimes both privately and at school) and Early Childhood Special Education. 

Commonly, children with autism were also given lessons or therapy of various extra kinds, such as Chiropractic, RDI®, Floortime®, Physical Therapy, private social skills classes, Patterning, swimming, martial arts, music therapy, horse-back riding, and art therapy or classes.  Half of the children with whom I have worked participated in seven different types of therapy or educational activities or more per week.  Each of these therapists or instructors interacted with the child in different ways, using different instructions and different consequences, which at best, is very confusing to the child, more likely disruptive.  It also creates a crazy quilt schedule involving schlepping the child from therapist to therapist, sometimes as many as three in a single day.   

How would you like being dropped off at school at 8:00am, then picked up by your Mom from school at 11am, schlepped home for a bowl of soup and bologna sandwich and a glass of milk for a quick lunch, then hustled off to Speech Therapy, and then taken to Karate lessons, and then brought home for a quick supper, and then afterward, Dad takes you to swimming before bedtime?  This sounds more like the child is being prepared to be a wheeler-dealer hedge fund manager, with an stomach ulcer and drinking problem, than a child with autism.  Everything we know about the make up of children with autism indicates this is a very bad idea.  Youngsters on the autism spectrum thrive on predictable, simple routines and consistent social demands carefully crated to fit with their abilities and traits.  They are made anxious by multiple and unpredictable social demands.   But parents fear they are short-changing their child if they don’t enroll him or her in an array of treatments. As Kurt Vonnegut wrote in Slaughterhouse Five, "So it goes."

When we refer to “treatment intensity,” we need to consider ALL of the demands being made on a child with autism.  Thirty hours of 1:1 behavioral intervention is supplemented with a minimum of five to fifteen additional hours of various other therapies or educational activities.  

I know of no evidence that this potpourri of multiple interventions has any beneficial effects for children with autism whatsoever.  There have been no studies of outcomes conducted in which children had EIBI, speech and special education alone, or a comparison group with multiple therapies.  We do know children with autism benefit from EIBI, some types of speech therapy and participation in appropriate special education services, but there is almost no evidence from any controlled studies that any of the other interventions listed are beneficial.  Parents often say, “If we're not sure it will help, why not provide them anyway, just in case?”

How much money do parents waste each week for this complex array of unnecessary services for their children?  Some, such as physical therapy ($140 per session), and chiropractic ($65 per session), social skills sessions ($75-150 per session), RDI® ($50-70 per week) and Floortime® ($50-75 per week) are usually reimbursed by insurance or Medicaid, which in a round about way, means the taxpayers pay for them.  This would amount to a minimum of another $16,500 per year per child.  If a child has a diagnosable physical disability as well as autism, physical therapy is appropriate, but the rest, which involve out of pocket or medical insurance expenditures are difficult to rationalize.   Laying out more than $16,000 per year per child, “just in case” just doesn’t make sense.

Minnesota Early Autism Project http://www.meapkids.org/

Thompson, T (2010) Individualized autism intervention for young children; Blending naturalistic and discrete trial approaches.  Baltimore: Paul H. Brookes, Inc

Autism: Treat or Treatment?

Let’s be clear about the incredibly difficult situation for parents of kids with autism every day of their lives.  It is often heart breaking.  Parenting a child with autism can be overwhelmingly difficult and demanding.  It can be disheartening and very frustrating.   Among the most difficult problems is that there is no such thing as downtime.  Parents have to be within line of sight of their child every second until s/he is old enough and has enough skills to occupy themselves without danger.  It can be absolutely exhausting.  Finding a way to occupy their child’s time with enjoyable activities that are not self-stimulatory, and they don’t hurt themselves or others or cause damage, is a constant challenge. Parents need every bit of help they can get. That’s a given.

But there is help and there is treatment.  Not all help is treatment.   A baby sitter isn’t treatment.  Participating in the YMCA or YWCA after school isn’t usually treatment unless it’s combined with therapist supervised interventions.  Treatment refers to an activity that produces demonstrably lasting improvements in the way a child with autism functions cognitively, emotionally and behaviorally, including reduction in disturbed and disturbing behavior.  Sometimes treatment is fun and sometimes it isn’t.  Often therapy is work.  Fun is just fun.

It is understandable parents of kids with autism want them to have fun so that everything in life isn’t such a struggle. Me too.  But the question is, “Is it reasonable to require fellow taxpayers to cover the cost of the child with autism’s having fun, as opposed to receiving effective therapy?”  The child critically needs effective therapy which will change the course of his or her life.  It’s unlikely riding a horse or being brushed with a feather will do that.  Ouch, it hurts to even ask the question, doen’t it?

Keeping a child occupied in ways that are interesting and minimizes behavioral outbursts, is a great idea. I’m all for it.  Always recommend it to parents.  That isn’t the same as therapy.  The autism community has gradually fallen into the trap of relying upon various costly specialized services for their children labelled “therapy” which have no demonstrated lasting therapeutic or educational benefit for their children; those activities serve as enjoyable, time-filling activities that keep the child busy.  Sometimes the professionals offering such service encourage parents to do some of the same fun things at home, like swinging in a hammock.  How bad can that be? Dads and moms have something they can do with their child, who is often difficult to engage.   It make sense that parents would feel better when their kids are having a good time and not getting into trouble.  But that’s not the same as therapy.

Early on following their child’s diagnosis, parents of children with autism in the US discover that there are some activities mistakenly descried as “therapy” for children with autism, that health insurance will pay for, even if they don't do any real good. Often their pediatrician or family doctor may even tell them these various “therapy” activities are important for their child, despite the fact there is almost no evidence they are useful.  When parents ask about them, the doctor says, “The experts say it can help, and it probably won’t do any harm, so give it a try.”   This reflects a regrettable lack of training of pediatricians and family doctors.  There is a very large body of evidence about which procedures are effective and which aren't. It really matters what physicians recommend. 

Sometimes children seem to enjoy these activities, like being swung in a hammock, or tickled or rolled in a blanket, often three times a week for a half hour or hour per session.  Occupational Therapists who perform these services, called Sensory Integration Therapy (SIT), are paid $35-40 per hour and the company they work for usually charges around twice that much, with the company keeping the other $35 or 40 dollars bringing the total to $70-80 per hour X 3 times per week or $210-240 for around 50 weeks per year, for a total of $10,500 to $12,000 per child.   It’s important that parents realize that while their daughter or son may enjoy participating in some of these activities, there is almost no evidence that sensory integration therapy produces any meaningful lasting effect that benefits children with autism. None. If you don't believe me do a PubMed search under the words "sensory integration therapy" and "autism."

Many children with developmental disabilities of various kinds exhibit some limitations in motor skills, such as walking on tip-toes or on a balance beam. Such deficits are not limited to autism but are common to many, many kids with mild to severe developmental disabilities and delays.  Many children with autism also exhibit such deficits, but not all.  There is little to no evidence these deficits are an educationally or clinically meaningful impediment to daily functioning in school at home or the community for most children with autism.  It is true, that some youngsters have medically diagnosable motor disabilities who do indeed require physical therapy. 

Yet a substantial percentage of parents of children with autism take their children to weekly physical therapy sessions that are reimbursed by health insurance or Medicaid for no other reason than that their child has autism.  Physical therapists are paid on the same scales as occupational therapists.   A typical child receiving physical therapy costs about $10-12,000 per year in reimbursement costs if the child participates three times per week.  There is no evidence that participating in physical therapy produces lasting improvements in the daily functioning in core autism domains or the quality of life of most children with autism.  I don't know of any evidence of social or communication benefits or improvements in repetitive, compulsive routines as a consequence of physical therapy  Only those who have a clear physical disability and limitation may benefit.

Some parents believe their children benefit from having a therapy dog or participating in equine therapy.   Generally, such services are not directly reimbursed by medical insurance, but often state Medicaid Waiver funds are made available via county social service agencies to pay for them. In other words the taxpayer still pays for them even if the basic Medicaid medical reimbursement system will not.   The cost of equine therapy (also called Hippotherapy) averages $40 to 80 per 30 minutes, usually once a week, or $2000-4000 per year.  I’m not aware of any evidence of equine therapy having any practical lasting benefits on autism symptoms, though some children with autism greatly enjoy riding horses.  No child failed to develop important skills that overcome their core autism symptoms because s/he didn't ride a horse.  Fun is fine, therapy isn't the same as having a good time.

There have been few studies of benefits of service dogs other than being a great convenience to parents, and the children generally greatly enjoy having a pet friend.  Service dogs are expensive.  The Guide Dog Foundation for the Blind, which has the most experience with service dogs spends about $55,000 to breed and train each of the 130 guide and service dogs it places with a blind person.    Similar costs are involved in providing a service dog to a child with autism.  You will see phony underestimates on line from companies selling service dogs, that leave out a lot of the actual costs, but if you look into them in detail, you will very likely be a bit shocked.  Sometimes the family doesn’t pay the total cost of obtaining the dog, but someone does.  Someone else, i.e. you and I, pay for the costs of breeding and training the dog usually through support of community agencies that are often partially publicly funded and usually tax exempt. In addition it costs about $1500 per year to maintain the dog, again which is often paid via county Medicaid Waiver funding.  The Foundation for the Blind, which trains 130 dogs per year, has a budget of $8 million. Service dogs are expensive. 

Lets go back to where I started. I know first hand how difficult it can be to parent a child with autism. I have a grandson with autism, who lived with us with his Mom and siblings for awhile a few years back.  It was a very humbling experience.  I also know parents need assistance with accessing lower cost autism-specific child care and recreational and leisure activities for their children, and more respite care a help than is currently available.  Parents of children with autism should receive 75% tax deduction for the cost of such services for their children diagnosed with autism. They need and deserve these services. No argument there.

But, it is time to stop the charade.  We need to stop asking for health insurance and taxpayers to cover the cost of enjoyable activities for children with autism to constructively fill their time, and calling those activities medical therapies.  Really. When there is almost no evidence of lasting therapeutic or educational benefit, it is improper to consider them therapy.  It’s another emperor’s new clothes deal, and most of us can plainly sees that the emperor is getting goose bumps.  It doesn't cost $70-80 per hour for organized child care or small group recreational activities for a child with autism which they entirely deserve and should receive.

I’m of two minds about service dogs. They can definitely be a very useful safety option for kids who tend to bolt or fail to look before crossing the street, or run off when visiting outdoor venues.  But I’m not at all certain that is the main way they are being used in practice.  Service dogs spend a lot of time lying on the floor in the family room while a child watches television, or is at her seat in the classroom doing her seat work.  That isn't the rationale for service dogs, who are in effect costly professional pets.  I’d like to see some accurate data on service dog utilization in autism. 

That $20-24,000 for sensory integration and physical therapy which has no lasting benefit, could go a long way toward assisting another child with autism by providing effective early intensive behavioral intervention and/or appropriate speech language therapy that are know to be beneficial.  If the cost of the horse therapy is considered as well, maybe another child could receive a year’s badly needed effective services that might change the course of his life forever.

Next time:  How Much Therapy is Enough?

The Misused “Faith” Word

How and when did “faith” become a political issue in the United States?  Americans seldom referred to faith in political discourse until the Presidency of Ronald Reagan, and the word came front and center with George W. Bush’s presidency, which used the word “faith” as the camel’s nose in the tent followed immediately thereafter by the unconstitutional invasion of religion into politics. 

“Faith” does not mean the same as “religion” as today’s Republicans insist. According to the American English Dictionary, “faith” refers to:  1. confidence or trust in a person or thing: faith in another's ability. 2. belief that is not based on proof: He had faith that the hypothesis would be substantiated by fact. 3. belief in God or in the doctrines or teachings of religion: the firm faith of the Pilgrims. 4. belief in anything, as a code of ethics, standards of merit, etc.: to be of the same faith with someone concerning honesty. 5. a system of religious belief: the Christian faith; the Jewish faith.  Note that #5 does not imply belief in a diety, for it could apply to any system of religious belief, such as Taoists, Jainists or Unitarian. Four out of the five meanings of “faith” have nothing to do with Christian religion.

 This misappropriation of the word “faith” to refer specifically to Christian religious beliefs and practices, is highly deceptive.  Bush’s political advisors thought they could mislead Americans about the narrowness of their intended meaning of “faith” as referring to “Judeo-Christian,” religious beliefs and practice. Three out of ten Americans are neither Christians or Jews. It is unlikely these Right Wing Republicans would endorse Muslims being permitted to practiced their “faith” (i.e. religion) in a public school after hours, as some Christian groups do.  Would it be OK if Buddhists insisted public schools not serve meat because it violates their religious beliefs, i.e. in Republican parlance, “faith.”

We are told this is a US Constitutional matter.  In a search of the US Constitution, the word “faith” used only once, in Article IV. Section 1. Full Faith and Credit shall be given in each State to the public Acts, Records, and judicial Proceedings of every other State, which has nothing to do with religion.  There is no other reference to faith.  None. Faith is not a Constitutionally relevant term.  The insertion of religion into politics is not a matter of faith, though the Bush people thought they could use stealth to insert Christianity into politics by substituting “faith” for religion.

The only US Constitutional reference to religion is in Amendment I. “Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the Government for a redress of grievances.”

Many volumes have been written about what the framers meant by the “establishment” clause and the “free exercise thereof” clause.  The “establishment” clause is generally interpreted to mean, to create, encourage or promote religion, any kind of religion.  This was made part of the Constitution, because of the perpetual abuse of individual rights in England, Scotland and Ireland by state-sponsored religious groups, leading the Puritans to flee to the New World.  The United States of America exists today to prevent state sponsored religion in England from violating the rights of its citizens, much as Evangelical Christians are very keen on violating the rights of Muslims and other non-Christians the US today.

The “free exercise thereof” clause means the government cannot prevent or interfere with the practice of religion in ways that do not infringe on others’ rights, to wit, the preceding phrase or other Constitutional provisions.  It means the government cannot prevent Muslims, Hindus or Buddhists from constructing a house of worship on appropriately zoned property.  It does NOT mean that an Evangelical Christian group can hold religious services in a public school that is funded by taxpayer money, because that would be a violation of the “establishment” clause.

 I’m reminded of English blasphemy laws, irreverence towards religious or holy persons or things was held to be an offence against common law from the 16th century to the mid-19th century. For a time Blasphemy was punished by flogging, branding and the piercing of his tongue by a red-hot poker...or worse. Blasphemy was also used as a legal instrument to persecute athiests, Unitarians and others. Blasphemy appeared to apply only to beliefs of the Church of England, not other religions.  The English King and Church didn’t say anything about faith. It was purely about religion, as in the US today.   

Some American Christians seek to use the power of government to demand compliance by 30% of non-Christian Americans with their beliefs.  Attempting to sanitize the word “religion” by calling it “faith” is another bogus marketing strategy.