Misnomers: Autism Cure and Recovery

Some of the people offering cures for autism are charlatans. Sad but true. Others are simply misguided. There currently are no cures, whether they are in bottles, as diets, in coffin-like low pressure air chambers or as quasi-medical treatments. But there are highly effective behavioral interventions, which combined with communication and educational methods that can change the life course for most children with autism.
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It isn’t necessary for a treatment to cure a condition to be valuable. Doctors perform orthopaedic surgery on legs that developed incorrectly in utero, and fit braces, and therapists work with the child for months or sometimes years so the youngster can stand, walk and run. Though he isn’t as capable as some of his peers at running the 100-yard dash, the young person born with an orthopaedic disability gets along very well in life, being well educated, holding a job and enjoying satisfying family relationships, though he isn’t “cured.”

The word
“cure” is bandied about among some autism treatment practitioners and parents. “Cure” is from the Latin word, cura, meaning management, administration, care, or concern. Over the centuries, the word “cure” has come to mean different things. According to the Oxford English Dictionary, the word “cure” means: #4. Noun: “A medical treatment; #5. Noun: “Successful medical treatment”; Verb: “the action or process of healing a sick person, an illness, etc”; Noun: “a thing that does this, a remedy”. #6a. Noun: “A particular method or course of medical treatment.” These meanings are from the late Middle English, early 18th century and middle 19th century. In other words this isn’t a new fangled usage.

Temple, Grandin

According to the modern medical meaning, “
A cure is the end of a medical condition; the substance or procedure that ends the medical condition, such as a medication or a surgical procedure (is called a cure)…. It may also refer to the state of being healed, or cured…. A remission is a temporary end to the medical signs or symptoms of an incurable disease.” Inherent in the idea of a cure is the permanent end to the disease. The disease or illness is entirely gone, disappeared, vanquished, finis’.

Conversely, a person that has successfully
managed a disease, such as diabetes melitius, so that it produces no undesirable symptoms for the moment, but without actually permanently ending it, is not cured. Writer and lecturer Temple Grandin, shown above with two of her friends, leads a full, happy and productive life, while acknowledging she continues to experience autism symptoms.

Other words that are widely disseminated on the internet and among some practitioners and parents are “Recover” and “Recovery”. Parents say their child has “recovered,” from autism, or is in the process of “recovery.”

The word “recover” (from the OED): #1a. Restore to health or strength, or consciousness, be well again. #2a. Regain health, strength or consciousness after, get better from, annul or remove the ill effect of; the latter now rare; #2c Cure, heal #3. Regain as a quality, condition, or attribute. This is a much older usage from the 15
th century.

Recovery means the “Possibility or means of recovering or being restored to a former usual or correct or condition, as health, prosperity, stability, and somewhat later, it referred to “The cure of an illness, wound, etc.” Kids with autism don’t recover, in the sense of obtaining a cure, though most of them remarkably improve functionality with effective treatment.
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Why does it matter what you call it? It matters enormously to mislead vulnerable parents who are willing to do anything to make their child’s life better. It is also inappropriate to mislead policy makers who are deciding about investing in treatment or educational methods, to lead them to believe a child who has undergone treatment no longer has any symptoms of autism, when they usually do. It is accurate to say the condition has been greatly overcome and effectively managed through treatment, enabling the person to live a happy, productive and functional life.

In using the term “cure,” if the speaker intends to imply that the condition has entirely disappeared, that is nearly always incorrect of young people with autism spectrum disorders. In almost all cases, there are some residual characteristics of autism, ranging from very mild, leaving the person with Asperger disorder being a little quirky with some limitations in social functionality, to much more obvious signs of compulsive rituals, social challenges in relations with others and literal, and not entirely functional use of language.

A parent who has been told her daughter would recover, and as a result believes her daughter has “recovered” from high functioning autism following very effective intensive early behavioral treatment may be disillusioned with the outcome. They would be likely be disheartened to discover she initially has few friends in school, tends to make excessively blunt remarks, is often overbearing and controlling with peers and gets into frequent power struggles with her teacher. It may take a year or more before she is invited to birthday parties by friends from school and “hangs out” with kids her age after school. She may also have tantrums periodically at home if some of her preferred routines are interrupted. All of these issues can be improved with time, but they tend to persist at much lower levels and recur during stressful periods later in life.
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In recognition of this tendency to have lingering difficulties. some people in the autism treatment world are extending the concept of “recovering” to autism, in the much the way it has been used in 12-step chemical dependency programs. Much as a person says they are a “recovering alcoholic,” under this interpretation, another person might say “I am a recovering person with autism.” I have very serious misgivings about creating an identity for ones-self that encapsulates the person within any disability or mental health label. The person is who ever they are as a living and breathing real human being, with wonderfully admirable qualities and some disadvantages that create challenges for them. They happened to have had autism as a child, much as they might have been a stutterer as a child, and may occasionally lapse into stuttering under stress. It would truly be unfortunate if the person’s future identity were entirely wrapped up in the autism label. I doubt the actor James Earl Jones, who had a history of stuttering, introduced himself when he entered a room by saying, “Hello, I’m James Earl Jones a Recovering stutterer.”
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Many people with autism function very well in daily life following effective early treatment, but will likely need more assistance than others on and off over the years. Periodically they may tend to have some difficulties coping with new social situations, communication difficulties, life stresses and emotional challenges. Social judgment and accepting work and higher education conventions and requirements isn’t always easy for people on the autism spectrum. While a handful of very exceptional people on the autism spectrum become accomplished musicians, artists or other professionals as adults, that is quite rare. Most muddle along like everyone else with work, family and life in general.

FACT: Half of the youngsters who receive intensive early behavioral treatment between 2-7 years of age function well in regular education settings in school, some with paraprofessional support, others without. In 1973 a follow up study showed that only 1-2% of children with autism achieved such an outcome before modern early behavioral treatments were available.
A child doesn't have to be cured to establish an enormous difference in their life.

Like people who require hearing aids (like me) or eye glasses, people with autism spectrum disorders usually require some form of
social prostheses following treatment, a living, working and family world that has made some adjustments so they can be more successful and enjoy life. It is a world that is more tolerant of the unique challenging traits of many people with autism as well as offering them opportunities to capitalize upon their strengths.