Our Way of Proceeding – an exploration of appropriate ‘treatments’ for autism

In my practice, I often receive panicked calls and emails from parents of autistic children.

“The clinical diagnosis of autism is often sought after repeated episodes of behaviour that the parents find out of accepted norms.”

When the child is evaluated, and found to be autistic, the clinics provide the parents with an array of service recommendations from their business partners. Typically, the clinics encourage the parents to sign their autistic child up for occupational, speech, and behavioural therapy sessions.

When time passes, and parents don’t see an improvement, they seek other “therapies” to “treat” their autistic child. Often, parents are not prepared for the enormous costs involved in such treatments. But, as loving parents, they find a way to pay for all of the care they’re told their child needs in order to make it in this world.

Lurking in the background of this discussion is a little discussed fact. “Treating” autism is big business. 

According to the research site, Statista, the “economic burden of autism spectrum disorders in the U.S.” was estimated to cost around 268 billion dollars in 2015. This figure is forecast to increase to around 461 billion dollars by the year 2025. From where will all of that money come? In the US, it will come primarily from the federal budget and overburdened families.

The NIH describes autism as “autism spectrum disorder (ASD) refers to a complex group of generally lifelong developmental disorders, usually diagnosed in childhood. Characteristics of ASD may include problems communicating; difficulty relating to people, things, and events; repetitive movements or behaviors; and difficulty adjusting to unfamiliar surroundings or routines. ASD is called a “spectrum” disorder because it can cause very different symptoms. Some people have mild symptoms and others have much more severe ones. Estimates of autism vary and prevalence studies in the United States have looked only at children, but the most recent U.S. Government statistics estimate that about 1 in 68 children has ASD. It’s 4.5 times more common among boys than girls.”

As I’ve written previously, medical science generally classifies things as ordered or disordered. When things are working “normally,” they’re considered ordered. When things are not working “normally,” they are considered disordered.

When doctors refer to something as a disorder, they mean “a disruption … to the normal or regular functions in the body or a part of the body.” For example, a disorder resulting from cardiovascular disease is an arrhythmia or irregular heartbeat. Treatments for such a disorder would include changes in diet, increase in exercise, and a regime of medication. Proof that the treatment was successful, that the disordered system has been returned to regular order, would be seen in the diagnostic results of tests like the Electrocardiogram (ECG).

The Diagnostic and Statistical Manual of Mental Disorders (DSM), Fifth Edition, is the 2013 update to the DSM, the taxonomic and diagnostic tool published by the American Psychiatric Association (APA). In the United States, the DSM serves as the principal authority for psychiatric diagnoses. Treatment recommendations, as well as payment by health care providers, are often determined by DSM classifications. 

The problem begins with the APA’s declaration that the autistic brain is a disordered “normal” brain. The APA assumes a baseline “normal” then assigns the term “disorder” to those things that do not operate according to their agreed upon definitions and baseline. 

In it’s press conference, held after US President Trump signed the Autism CARES Act into law, Autism Speaks noted, “This funding primarily supports autism research grants awarded by NIH which advance the scientific understanding of autism, expand efforts to develop treatments for medical conditions often associated with autism, and address the needs of people affected by it. The NIH Autism Centers of Excellence also fosters collaboration within and among research centers, increasing the power and efficiency of their efforts.”

Now, let’s assemble these quotes to synthesize the common threads. According the various US government health agencies and departments, the APA, and Autism Speaks, what we know as autism needs treatment that leads to a cure so that autistic people will no longer negatively affect their families and their communities. Consider what that statement says to someone who happens to be autistic – like me.

Nevertheless, the NIH notes that “no cure has been found for ASD.” It goes on to note that “many parents try complementary health approaches, usually along with conventional medical care, for their children with ASD,” ignoring the fact that “there’s very little high-quality research on complementary health approaches for ASD.”

But, let’s shift directions here. We’ve been considering “treatment” from the medical standpoint, “medical care given to a patient for an illness or injury.” Given the many problems with the English language that I’ve illustrated previously, what happens to this conversation if we use an alternative definition of “treatment?” “Treatment” can also mean, “the manner in which someone behaves toward or deals with someone or something” – as in, “ Title IX’s directives required equal treatment for men and women.”

“Thinking  in this way, we move away from the medical world, and the potential for unethical and harmful modifications to the essence of what makes us uniquely us, towards a behavioural value statement– a way of proceeding.”

Let’s unpack that statement – autism as a way of proceeding.

A way of proceeding are certain attitudes, values, and patterns of behavior that join together in the person and are part of their presentation of their authentic selves to the world.

The characteristics of our way, the autistic way of proceeding, are shared by most who find themselves diagnosed as being on the spectrum.

The following characteristics can be included in our way of proceeding:

·      A deep personal love / connection for our particular interests

·      Contemplative in our actions

·      Highly self-directed in our learning

·      Technologically enabled solidarity with those who share similar interests, withersoever dispersed around the globe

·      Highly empathic

·      Ever searching for the magis (more) – or excellence in all our endeavors

When it comes to our pursuits, when working towards our Quality World Picture, mediocrity has no place in our worldview. But our measurements aren’t artificial, judging our progress against some checklist or the accomplishments of a peer or age group. Our measurement is our position in space and time relative to our desired destination, as represented by our Quality World Picture. 

“Parents and medical professionals often look upon autistic behaviour as problematic, and sometimes harmful. They see “treatment” as a way to change that behaviour “for the better” – with “the better” being measured externally by someone other than the patient.”

You can certainly see this in ABA. But they often fail to recognize that the behaviour is an attempt at communication. Thus, in stopping the behaviour, they’ve interrupted the attempt at communication – which can have tragic consequences.