Treatments for Autism: Therapy or Torture

Here's my final paper for my Comp II class.  An 8 page (though mine ended up being 9 3/4 which is good because 10 was the max it could be) argumentative synthesis report.  I actually had a fun time writing it.  As you know I am autistic and autism is something I'm passionate about.  Plus people don't generally seem to know a lot about autism and the kinds of things we have to deal with so it's worth educating them a bit.  As I wasn't diagnosed at the time, the therapies I went though were not to 'cure me of my autism' but rather my ADHD, ODD, OCD, and social phobias and anxieties.  I've not had it graded yet but I'll let you know what I get.  Here it is:

Treatments for Autism: Therapy or Torture

          Autism is a neurodevelopmental disability characterized by difficulties in social situations, verbal and non-verbal communication and repetitious behaviors.  By current accounts Autism Spectrum Disorders, commonly referred to as ASD or autism, affect one in 68 children (“Data & Statistics”).  Questions have been raised as to whether the rates of autism are rising or if it is due to the changes in diagnostic criteria that have resulted in additional people receiving a diagnosis.  It is not known for certain what causes autism, but doctors are of the opinion that it is caused by a combination of environmental and genetic factors that occur during pregnancy.  Though there is no approved cure for autism, many therapies boast that they can reduce or remove symptoms so as to make the autistic person appear neurologically typical.  In an effort to normalize the autistic person, these therapies employ various methods which are generally physically or mentally harmful.  Most autistic people are of the opinion that any therapy with the goal of removing autistic type behaviors in order to make an autistic person pass as neurotypical is not therapy but abuse.  Quite a few of the most common therapies employed in the treatment of people with autism are not therapies; they are torture. 

          One of the most common recommended therapies for autism is Applied Behavior Analysis (ABA), also referred to as the Lovaas method after Dr. Ivar Lovaas who created it, in which positive and negative reinforcement techniques are employed so as to bring about a change in behavior.  Generally, the behaviors that ABA seeks to change are those that make the autistic person comfortable.  Sparrow Rose, autistic advocate and author of the blog Unstrange Mind, says the following about ABA therapy:

                     ABA’s core belief is that forty hours per week of therapy geared

                    toward making a child externally appear as “normal” as possible

                    will “fix the brokenness” inside that made the child behave that

                    way. ABA believes in an extreme form of “fake it until you make

                    it,” and because it is behaviorism at its most pure — that is, a

                    psychological science that treats internal processes as irrelevant

                    to function (Lovaas said, ‘you have to put out the fire first before

                    you worry how it started’) — it treats behavior as meaningless

                    and unwanted actions rather than as communication.

Ignoring the fact that autistic people are not broken and that no amount of therapy will cure them of being autistic, this therapy is supposed to occur 40 hours a week for children as young as two years old.  What type of child, autistic or neurotypical, has the fortitude to not only maintain their current functioning, but also to learn and improve while forced into basically a full time job?  These children are forced into a state of perpetual exhaustion. 

          The goal of Applied Behavior Analysis is to get the autistic person to conform to the neurotypical standard.  Amy Sequenzia, non-verbal autistic advocate, states that the ABA she went through was disrespectful to her autonomy.  She was not allowed to say no or to make her own choices (“Non-speaking Autistic Speaking”).  In a separate article, Sequenzia goes on to say that ABA therapy consists of the therapist, regardless of the autistic person’s wants or needs, commanding the autistic person to perform a task, to give a response, and to suppress their natural movements (“Autism Women’s Network”).  The autistic person sits through forty hours a week of being told to and often forced to make eye-contact, to point to the right item, to say what the therapist wants to hear all while being told that they are not good enough, told that normal people can do this without issue, told that if they cannot or will not do this they are useless.  The ABA therapist then takes this beaten down and exhausted autistic person and says: ‘See look, it does work.  This person no longer exhibits x autistic behavior.’  Part of ABA’s ‘success’ is not due to the breakdown of autistic behaviors, but the fact that the autistic person is so exhausted they do not have the energy to do them.  Applied Behavior Analysis does not teach skills, it teaches compliance and that autistic people do not have the right to say no.  ABA teaches people with autism to ignore their natural movements and behaviors and to do things that they find unnatural or painful in an effort to appear normal.

          Similar to ABA is Systematic Desensitization Therapy which differs from Applied Behavior Analysis in that while ABA typically focuses on building up ‘positive’ behaviors, the focus of systematic desensitization is to eliminate the ‘negative’ ones.  People with fears or sensitivities to things tend to avoid them; the purpose of desensitization therapy is for the individual to overcome their need to avoid things by gradual exposure to the feared item with the end goal of complete ease around it (“Desensitization”).  The methods used are repeated exposure to whatever is causing the negative reaction.  Autistic people generally suffer from an unusual amount of sensory sensitivities.  These sensitivities can be anything from being blinded and feeling intense pain from bright or fluorescent lighting, to the skin feeling as if it is being ripped off when touching certain textures, to loud or unexpected noises resulting in a stabbing sensation in the ear. 

          In order to cure the autistic person of their ‘unnatural’ reactions to these situations, the therapist would purposely and repeatedly expose them to the thing they are sensitive to.  I have been through this type of therapy.  The above listed sensitivities are my own; I have problems with lights, textures, and noises.  In an effort to cure me of my ‘abnormal’ reactions, the therapist would randomly shine a blinding light into my eyes, or blast an air horn.  I remember screaming and crying while my hands were forced into unpleasant and painful textures.  I remember hiding under the table crying after having honey smeared on me because ‘being sticky is part of everyday life and it’s something you have to get used to.’  Being sticky is most definitely not a part of everyday life; normal people, like they were attempting to make me, do not walk around all day being sticky.  I went through this painful and unhelpful ‘therapy’ and it did nothing; if anything, it made me worse.  Fifteen years later and I still suffer with lights and textures and noises.  

          Popular among people who believe autism stems from a physical or environmental cause, some parents are dosing their autistic children with Miracle Mineral Solution, MMS, also known as Chlorine Dioxide.  For the layperson, chlorine dioxide is more commonly recognized as bleach; yes, that bleach, the kind that is used to clean clothes and sanitize kitchens and bathrooms.  Dr. Andreas Kalcker, biophysicist and chlorine dioxide researcher, is of the opinion that not only is autism treatable, it is curable with Miracle Mineral Solution.  Kalcker claims that in the past three years the Miracle Mineral Solution treatment, which entails having the autistic person consume anywhere from one to 60 drops of MMS per day, has cured 133 children of autism (Kalcker).  This statement of 133 cured autistic people has not been verified by any reliable source, nor is a supposed success rate of 133 out of the tens of thousands of people who have been administered this ‘cure’ a miracle.

          The theory behind MMS as a treatment for autism stems from the fact that chlorine dioxide can kill parasites, bacteria, and viruses, which some people believe to be the cause of autism spectrum disorders.  Miracle Mineral Solution does kill off those things, but it wreaks havoc on the body in the process.  MMS is a dangerous poison; it would be unwise to think any good could come from ingesting it.  Even if Miracle Mineral Solution did cure autism, doctors say that it is not worth the risk.  The FDA warns people against its usage stating: “The product, when used as directed, produces an industrial bleach that can cause serious harm to health. … High oral doses of this bleach, such as those recommended in the labeling, can cause nausea, vomiting, diarrhea, and symptoms of severe dehydration” (“Miracle Mineral Solution”).  MMS can also cause damage to red blood cells, which can lead to the development of anemia and in severe cases, respiratory failure.  Well-intended parents and doctors are poisoning autistic people with Miracle Mineral Solution.  Autistic people are suffering, forced by their parents or doctors into taking this dangerous toxin.

          Chelation, like Miracle Mineral Solution, is another dangerous and unproven treatment for autism.  Proponents of this method believe that autism is caused by a surplus of heavy metals in the blood and through chelation those metals can be removed.  Chelation is performed by injecting the autistic person with the chelating agent, ethylene diamine tetra-acetic acid, EDTA, which binds with the heavy metals in the blood so that they can be easily passed in the urine.  Though not generally dangerous when used as intended for heavy metal poisoning, when chelation is used as a treatment for autism there can be severe and potentially life-threatening side effects including fever, headache, nausea, vomiting, heart failure, abnormally low calcium levels, permanent kidney damage and bone marrow depression (“Chelation Therapy”).  Chelation therapy has led to the death of at least one child; five-year-old Tariq Nadama died from cardiac arrest elicited by low calcium levels shortly after receiving the treatment.

          Even with the risks, many parents swear by chelation therapy, stating that it has recovered or cured their child’s autism.  Special education advocate and mother of an autistic son, Lisa Brown, claims that within three months of starting on chelation therapy her son Ben exhibited “lower outbursts, less aggressiveness, better concentration, much more language, reading skills, and personal control” (“Autism Mom Shares”).  Steven Novella, neurologist and editor of “Science-Based Medicine,” believes that chelation does nothing to cure autism and giving it to children is highly unethical.  Novella goes on to state:

                     Children with developmental and neurological disorders will often

                    improve as they age. This background maturing can easily be

                    mistaken for improvement in response to a treatment. There is also

                    the numerous psychological effects that highly motivate parents to

                    believe their children are being helped, even when they aren’t (such

                    as confirmation bias and expense justification). The simple fact is

                    that history has shown that anecdotal evidence is not reliable.

There has been no dependable evidence that chelation therapy is successful at curing autism spectrum disorders, yet autistic people are being forced to go through this life-threatening treatment. 

          Some people believe that autism spectrum disorders can be cured or reduced by physical means, which have resulted in the following therapy methods.  Banned in the United States but popular in France is a bizarre form of hydrotherapy known as packing which involves tightly wrapping autistic people in cold, wet blankets.  During a packing session, autistic people are stripped down to either their undergarments or completely naked and wrapped on all but their head as tightly as possible in wet towels and sheets that have been soaked in freezing water.  The ideal temperature for the towels and sheets used in this treatment is a mere 50 degrees Fahrenheit.  For reference, water below 70 degrees Fahrenheit can lead to hypothermia in as little as 15 minutes (“The Facts on Hypothermia”).  The autistic person is tightly wrapped in these freezing sheets, covered with an additional dry blanket, and kept like that for 60 minutes during which time they are encouraged to talk to a psychologist.  This therapy is administered from once a week to every day depending on the severity of the person’s autism.  Doctors in support of this practice claim that it, “reinforces childrens’ consciousness of their bodily limits” (“Packing Therapy and Autism”).  Many autistic people have trouble recognizing their bodily limits.  Proprioception is the sense that tells where the body and limbs are in space and in relation to each other, which for reasons that have yet to be determined, are lacking in people with autism spectrum disorders.  This lack of proprioception input is the reason many autistic people have erratic movements and seem unduly clumsy.  Being tightly wrapped provides a strong sense of where the body is, which does reinforce the perception of the persons’ bodily limits.

          If it were not for the cold temperature and lack of control on the part of the autistic person, this could actually be a useful therapy.  Many autistic people crave the sort of deep pressure that being tightly wrapped provides, which speaks to the success of deep pressure providing items such as weighted blankets, body socks, and Dr. Temple Grandin’s hug machine.  However, the difference is that autistic people willingly choose to use those things; no one would choose to be forcibly bound in towels cold enough to induce hypothermia.  Oliver Bousquet, former psychiatric nurse and father to a non-verbal autistic boy, said that while his son enjoys deep pressure, “It is very difficult to imagine my son wrapped in sheets, without being able to make a movement. He would be distressed but he would not be able to express his distress” (qtd. in Spinney).  Most doctors are of the opinion that packing is an unethical and demeaning treatment that violates the rights of the people subjected to it. 

          In the 1960’s, prior to Dr. Lovass’ development of ABA therapy in the treatment of autistic people, one of the methods Lovaas employed was aversion therapy, sometimes referred to as aversive therapy.  One of the most controversial methods in the treatment of autism, aversion therapy involves using electric shocks as a way of curing unwanted behaviors.  In 1965, an article titled "Screams, Slaps & Love A Surprising, Shocking Treatment Helps Far-gone Mental Cripples" from Life Magazine describes how aversion therapy was used in the treatment of a nine-year-old autistic girl called Pamela who kept showing autistic behaviors during reading lessons.

                     To give her something to be anxious about she was taken to the

                    shock room, where the floor is laced with metallic strips. Two

                    electrodes were put on her bare back, and her shoes removed.

                    When she resumed her habit of staring at her hand, Lovaas sent

                    a mild jolt of current through the floor into her bare feet. It was

                    harmless but uncomfortable. With instinctive cunning, Pamela

                    sought to mollify Lovaas with hugs. But he insisted she go on

                    with her reading lesson.  She read for a while, then lapsed into

                    a screaming fit. Lovaas; yelling ‘No!’, turned on the current. 

                    Pamela jumped – learned a new respect for ‘No.’

In the 50 years that have occurred since this article was published, one would think some new, less abusive methods would have been developed in the treatment of autism, and methods such as shock therapy would no longer be employed.  Unfortunately, that is not the case; aversion therapy is still used as a treatment for autism.
          The Judge Rotenberg Center (JRC), which treats people with severe mental illness and developmental disorders, is one of the only locations in the country where aversion therapy is still regularly performed.  JRC states that aversion therapy is the only non-pharmaceutical cure for bad and destructive behaviors in autistic people.  Glenda Crooks, JRC’s executive director, says that while the shocks are painful they do not cause any injuries; however, former employee Greg Miller argues against that, stating JRC patients regularly received severe burns from the treatment.  Aversion devices today are now easily contained in a backpack like apparatus referred to as a Graduated Electronic Decelerator (GED).  The GED device, which some people are forced to wear for up to 24 hours a day, is attached to electrodes placed against the person’s skin and controlled by a remote control carried by a doctor, nurse or staff member.  Jennifer Msumba, an autistic woman, who received aversion therapy for things like head-banging and hand movements while at the Judge Rotenberg Center asserts that, "I felt like I was being punished for being born. Because I was disabled I was being punished” (qtd. in Werner). Msumba further stated, "It's so scary. I would ask God to make my heart stop because I didn't want to live when that was happening to me. I just wanted to die and make it stop."  This sort of treatment is completely unacceptable.  The United Nations believes the use of aversion therapy is torture and claims that it would not even be legal to use on convicted terrorists (Willingham).  Autistic people receiving aversion therapy are being treated worse than terrorists; in what universe is that anywhere near acceptable? 
          I am fortunate in that the treatments I have received for my autism were not of the sort that caused any severe permanent damage.  The abusive Applied Behavior Analysis and Systematic Desensitization therapies that I endured, while horrible, have not caused me any irreparable harm.  Unfortunately, the same cannot be said for many of the other autistic people who have been forced into these torturous therapies.  The answer as to whether a therapy is abusive or not can be summed up by asking the question: would this be considered abusive if it was done to a typically functioning person?  Would it be acceptable to force a neurotypical child to drink a bleach mixture to solve their tantrums?  Would it be acceptable to force a two-year-old child to perform the same monotonous tasks for forty hours a week regardless of their wishes?  Would it be acceptable to perform shock treatments on someone for moving their hands?  The answer is of course: no; this is not acceptable.  It is time to do away with the notion that autistic people are broken and needing to be fixed.  It is time to do away with therapies promoting a neurotypical standard.  It is time to do away with these abusive and torturous treatments for autism.