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.

Autism: Magical Thinking

The autism field is knee-deep in magical thinking. Always has been as long as I can remember.  Pseudoscientific false cures in recent years have included Secretin, Facilitated Communication, eliminating MMR vaccinations, Hyperbaric Oxygen, Chelation and Gluten Casein free diet.  Recently, various technology aids have been the focus of sham cures.  There will always be a swindler waiting to victimize vulnerable people. 

But charlatans find it difficult to sell their wares without cooperation from the news media. And many in the news media are all too eager to cooperate with frauds. Members of the press greatly prefer telling stories about seemingly miraculous emergence of signs of intellectual and emotional typicality previously “locked-up” with a person labelled as having severe autism, than reporting the laborious process that actually produces typical skills.  They almost never tell the whole story, i.e. were the remarkable skills evaluated independently  to see if they were actually remarkable, or how the emergence of the skills actually came about.  An interesting case in point is the Carly Fleishmann story that has made the rounds in the UK and Canada, and to a lesser extent than in the US, though there was a report on ABC News awhile ago. (Thanks to Prof Bob Remington of Southampton University for drawing this case to my attention.)

Carly Fleischmann Keyboarding

A14 year-old girl (now 18) who appeared to have severe autism is described in news media reports as suddenly, almost miraculously, beginning to produce long, complex sentences, using sophisticated vocabulary, using single keys on a computer key board.  There are problems with this alleged miracle.  Though she is described as “non-verbal” she must have had a very large receptive vocabulary before the “miracle” happened. One wonders how this allegedly non-verbal child came to understand and produce sentences more typical of a bright typical teenager or adult? Not credible. See: Magical thinking. 

But, then when bombarded with a variety of questions and false claims made by others, especially about Facilitated Communication, Carly’s Mom clarified things. No magic at all. “When she was 2, we starting with PECS --did picture exchanges for every imaginable item under the sun. Many of the games I bought her had to do with reasoning and logic and were highly visual in nature - memory games, sequencing, matching -- these were with pictures, words, numbers, etc. We had visual schedules (with the words underneath) for everything she had to do --getting dressed, using the bathroom, tidying up, meals, going outside, etc. The whole house was also labeled -- my son went crazy with the label maker. Every item was stickered. We then moved to communication binders --we started that by category --food, acitivities, clothes, weather, feelings, etc. She never got to do what she wanted until she used the communication binders to show us. These were laminated sheets we made up with the mayer johnson picture symbols in them as well. We kept that going for a long time and all this time her ABA programs were also teaching her how to spell and read. We created stories for her using the mayer johnson software and didn't just read them to her --she was looking at the pages as well. We kept the binders for ease of use and portability but we were also learning about augmentative communication devices since it was clear her apraxia was so severe. We also taught her some sign language but realized that while we understood the signs, most of the world did not and so that was not going be to a functional option for her. The first machine was a Dynavox, the second was a Springboard and the third was a Lightwriter which we used in conjunction with her laptop. We thought she would like the Lightwriter better but she preferred the laptop even though it is more cumbersome --but it is what other kids have and that is a concern to …” (A Live Toad Every Morning, February 28, 2008) 

Parents of children with autism are, in effect, victimized by members of the news media who get their jollies from telling false stories about autism magic.  They write an opening line describing a child with a serious disability, skip the middle, and add a miraculous conclusion about magical recovery to normality resulting from a therapeutic slight of hand.  How can we better help parents fend against this need for the magical by both parents and the society surrounding them?

An imagined child with autism waiting to magically "Emerge" 

 I highly recommend Joan Didion’s book, “The Year of Magical Thinking” for parents of children with autism, especially those who have only recently learned their child’s diagnosis.  It may seem offensive to compare the death of a loved one with learning their child has autism, for they are light years apart in most ways.  But psychologically, embodied deeply within the experience of parents of a child with autism, they are remarkably similar.  Though the book is a few years old, there is much to be learned from Didion’s book for parents of children with autism.

Magical Thinking is not academic discourse about grief or a finger-wagging polemic of the profoundly disturbed reactions of people to the death of a loved one.  This is not a Kubler-Ross psychoanalytic exploration of grief… not at all.  It is a straight-faced, compassionately humane exploration of magical thought processes of those suffering extreme losses, and the equally mystical reactions of the society surrounding those experiencing the loss.

Didion’s book is based on her own tragic experience in which “the only daughter of Didion and her husband, John Gregory Dunne, fell into septic shock from a runaway pneumonia infection. Her doctors put her into an induced coma.” On returning from the hospital to their apartment. While the couple was talking over supper, John Gregory Dunne suddenly died.

Didion wrote, "I had entered at the moment it happened a kind of shock in which the only thought I allowed myself was that there must be certain things I needed to do.”  All too familiar to every parent who has just received their child’s autism diagnosis.  Didion reflects on the people who believe "absolutely in their own management skills," the power of telephone numbers: the right doctor or donor or politician. She observes that this becomes at a certain point an evasion from reality.”

“Didion tells her story largely by tracing a kind of dance between two kinds of deceptive language: on one side, there is the half-secret, personal language of "magical thinking" that creates needs, interdictions, omens: I need to be in the one city where the dead person would return, if he came back; I cannot give away certain of that person's shoes; the dead sea gull and the typo and the undeleted e-mail message are signs. That internal voice, "magical thinking" denying its own desperation, whispers that the funeral ritual will restore what is lost…. On the other side, equally evasive, more subtly irrational, there are the voices of society. When a friend tells us about a terrible diagnosis, we may need to respond with an anecdote about someone we know whose brother-in-law survived just that illness with no problem, or we need to tell about an herbal tea that produces miraculous cures. Telling those in grief that they are "bearing it very well" or "being strong" can be not only presumptuous, but coercive: the voice of conventionality saying it does not want to be disturbed. These stoical platitudes represent a communal, anonymous kind of magical thinking or denial of reality.”  How many parents of a child with autism have been told about a miraculous cure, or the equivalent of Didion's “an herbal tea” that will make their child’s autism vanish, and urged them to try this curative talisman or suffer the consequences... i.e your child will suffer from severe autism all his life, and it will be YOUR FAULT!

Didion found reading these sentences especially apt, and they apply equally to parents of children with autism: "Persons under the shock of genuine affliction are not only upset mentally but are all unbalanced physically. No matter how calm and controlled they seemingly may be, no one can under such circumstances be normal. Their disturbed circulation makes them cold, their distress makes them unstrung, sleepless." 

My next essay in about two weeks will be about what to do after The Year of Magical Thinking has expired, and the actual, honest to God real future of their child with autism remains starkly before parents.  What do we do next?

Most of the latter part of this essay is based on Robert Pinsky’s review of 'The Year of Magical Thinking': Goodbye to All That” that appeared in the NY Times, October 9, 2005.  Sections in quotes are from Pinsky’s review. The Year of Magical Thinking is available in paperback and Kindle Edition from Amazon.com for $10-12.