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?