Published in 2014 in Spanish, English version updated in 2018
This post is meant for people who are not immersed in the daily experiences of a family where one member (or more) is on the autism spectrum. It is not comprehensive and the therapies are very simplified.
The therapies for autism can be broadly divided into two categories, one being the search for a non-existent cure, and the second being therapies that aim to improve the quality of life of autistic people. There is no cure, since autism is not an illness. What has been proven, is that there are important and noticeable neurological differences between an autistic and a non-autistic person. Autistic people are born with an autistic brain, which probably started forming as autistic in early gestation.
Treatments for any illness or condition can or not be science-based, with dubious or clear evidence of its efficiency. When they are not evidence-based, meaning that the treatment has not been proven through rigorous scientific studies to work, those treatments are based in anecdotes… and humans have very poor memories. Now, that has been scientifically proven. We don’t remember facts, we remember what we want to remember, we have a selective memory and our memory is filtered by our prior beliefs, and even our mood or the weather (seriously!). Our poor memory and our wishes to see improvement leads to a therapy or treatment to be used for far too long, despite poor results.
One of the best examples of this is bloodletting. People were bled thinking that this would bring back their body’s balance, ending the illness. It was first used in Egypt, then Greece and Rome, and it was used broadly, for all types of illnesses, despite the fact that way too many of the patients died. The people who died because of this treatment include members of the royalty, and George Washington. It should be noted that William Harvey (British doctor, who carefully described the circulatory system) started speaking against bloodletting in the 17th century. Regardless of his warnings, the practice continued until the beginnings of the 20th century.
Bloodletting was practiced widely and definitely in good faith. Right now, another type of dubious treatment, homeopathy used to “cure” cancer, is under the microscope in Europe as more and more deaths and the stories of how those people languished and died are coming to light. Studies at Yale University are seeing that people using alternative treatments for cancer, instead of chemotherapy or radiation, have a higher chance of dying. The history of medicine is plentiful in advances, as well as in myths and misinformation about all types of illnesses, including diabetes, obesity, cancer, etc. And “cures” for homosexuality, for example. It is not a surprise, then, that there are plenty of charlatans saying they can “cure” autism.
Some of the therapies that do help people on the spectrum are:
Speech therapy is not only used by autistic people; it is used by anybody with communication or speech delays or deficiencies, or with executive function issues, brought by physical or neurological conditions. It does improve the communication skills and speech clarity, but it cannot be determined in advance how much a given person will improve. It depends on the type of physical issue and the person’s neurology, too. The goals and methods used are based on the needs of each person. If the person wants to develop oral language, that can be the goal; but if oral language is not feasible or desired, other communication methods can be used, such as sign language, pictographs, writing, using gestures or body language, or through devices, such as IPad, a laptop, a speech-generating device, etc. All of the non-oral communication methods fall under the umbrella term “augmentative and alternative communication.” A good example of AAC used successfully is Carly Fleishmann, an autistic woman who doesn’t communicate orally. She was thought to be intellectually disabled until she was able to learn to type and start communicating. Other people, like my daughter, speak, but the development of “functional” speech is either delayed or slower than the mean.
It is used to treat sensory integration disorder, which is very common in autistic people (though it is not a “disorder” by itself; it is considered a symptom). Occupational therapy can also help improve fine motor skills required to get dressed, use scissors, eat with a spoon or a fork, handwriting, etc. The benefit is seen as the person enjoys more independence, and it does improve the quality of life of the person. Occupational therapy always depends on the needs of the person.
It is used to improve the processing of sensory input, especially input given by the vestibular and proprioceptive systems. Some of the skills that can be developed are coordination and balance, including standing up, walking and sitting.
Proven to work, but controversial–ABA: Applied Behavioral Analysis
ABA is based on behaviorism and on the quantitative analysis of sessions to achieve a given goal (“so-and-so will look at the person calling her or him three out of five times…”). At a practical level and simplifying it enormously, the idea is that you reward desired behaviors and try to eradicate undesired behaviors. The original model, created by Lovaas in California, was pretty much torture: to eradicate undesired behaviors, therapists would yell in children’s ears and used electric shocks. Many autistic adults report psychological damage due to that type of ABA. It has changed considerably, and instead of the brutal methods used to eradicate undesired behaviors, the trend is to ignore undesired behaviors while rewarding the desired behaviors. That has been proven to be much more efficient than punishment. A basic tenant of the evaluation is that the behavior should be observable and measurable, which also led to sessions that were incredibly boring for the children. Many autistic adults who underwent ABA therapy are against it because of the torture, really, that they received. Also, because they consider that ABA, and other therapies that are somewhat similar (such as the Early Start Denver Model, Floortime and others) try to erase autistic behavior to turn the autistic person into a pseudo non-autistic person. Self-advocates also warn that these methods train the person to be compliant, which could potentially lead to unreported abuse.
For example, “stims,” or self-stimulating behaviors–repetitive movements or speech patterns–are a behavior that some therapists and parents want to eradicate. Normally, stims are a reaction to stress or to happiness. Autistic adults have stated that stimming is a natural behavior and should be accepted; without stimming, their happiness is not as profound, and stress cannot be properly alleviated. They believe that wanting them to have “quiet hands” is ableist, and an imposition given by the non-autistic majority. There is actually a book, “Loud Hands: Autistic People, Speaking” comprised of essays written by autistic people about their experiences dealing with an ableist society.
As a parent, I totally agree with them in that stims such as flapping your hands, pacing, balancing your body and similar behaviors, are safe and should be accepted. If they bother someone else, that someone else is free to look elsewhere or go away. Some stims, though, can lead to serious physical problems. There was a girl I saw several times, who had severe bruxism. She would grind her teeth so hard, that you could hear it from far away. That level of bruxism can cause dental issues with serious and life-long sequels. Other behaviors are related to self-harm, such as skin picking or hitting themselves. I can understand the worry of parents and other loved ones in relation to these situations.
Some therapies are not backed up by research, but there is also no evidence that, as therapy, they can harm anybody. The inherent risk of each activity does remain. Among those therapies are:
Hippotherapy (horses). The idea is to work on sensory integration, muscle tone, coordination, as well as to lower anxiety, increase attention span, decrease social isolation, etc. Anecdotally, there are many success stories. Even just the contact with animals, such as dogs, has been seen to increase wellbeing. The results do look promising.
Music therapy. The goal is to increase wellbeing and sociability, decrease anxiety and irritability as well as sensory deficiencies. There is no hard evidence backing these claims, but relaxation and an enhanced sense of wellbeing have been reported by a great number of people, autistic and non-autistic.
Supplements. Supplements are sold not just of autism, but for many different populations: for women, for pregnant women, for children, for seniors, and so on. There is some evidence that they provide no benefit for most people and that, in some cases, it can actually cause problems. Supplements are not recommended for healthy people who eat a balanced diet. Some specific supplements are sold as the “cure” for everything from autism to cancer; none of them has been proven to work.
Melatonin is a hormone, produced by the pineal gland in the brain. Its production is triggered by darkness, and it makes people sleepy. It is recommended for people with insomnia, which affects many autistic people. Some studies have shown that if melatonin is used, the person needs to be exposed to daylight early in the morning. The results are incredibly varied; some people claim it has been amazing, some others don’t see any results or find it helps at the beginning but not later. The scientific results are not conclusive.
Up to this point, the therapies or treatments I’ve mentioned do have the goal of improving the quality of life of the autistic person. Some of it is based on the ideas non-autistic people have about autistic people. We (non-autistics) tend to believe, for instance, that “all people” should enjoy looking at others in the eye. Or we can get scared and worried seeing stims that apparently hurt the person, as I mention above. We also could think it is better for the person to try to “fit in” with their peers, to prevent bullying. Some of the goals we can have in a therapy of any kind (ABA, speech, occupational) can be considered by autistic people as a negation of their neurology and their needs. However, those goals, even when mistaken, are planned because the parents, therapists and many times the autistic person think it will improve their social, physical or emotional wellbeing.
Then, we have the second group. Those who believe that autism is an illness and should be cured or at the very least, its “symptoms” should be ameliorated. That starts with a negation of their intrinsic being and their unique neurology. It creates the idea that the person is damaged, or that the person is trapped inside of some sort of jail and could emerge once the “bars” are taken out. The results are many times unsatisfactory, and this can lead to an increase in the intensity of “treatments,” or to the use of more, varied types of “cures.”
Some of these “treatments” can have detrimental effects, such as a diet that is free of gluten and casein (GFCF diet). The idea behind this diet is that gluten and/or casein cause or increase “symptoms” of autism. Many studies have proven that these diets are not efficient. Also, the lack of grains and dairy can cause nutritional deficiencies, and gastrointestinal distress due to the low fiber present in these diets. Additionally, gluten-free products are loaded with carbohydrates and many chemicals in a quest to achieve the texture naturally given by gluten.
Some researchers consider that, when a behavioral improvement is seen, most likely what is happening is that the person is autistic and has intolerance to gluten, casein or lactose. The other issue with these reports is that the data is based on observations from parents, who may experience expectation bias, or not remember correctly. For example, a study showed that the idea of “sugar high” is in the parents’ minds. First, it was determined if the mothers believed sugar caused hyperactivity in their children, based on their own experiences. Next, their children were divided into two groups, at random. One group was supposedly eating and drinking sugar, while the other half was to receive sugar free food and drinks. The parents who believed sugar made their children hyperactive and were told their children were ingesting sugar claimed the children were “hyper,” the other parents did not report hyperactivity in their children. As you may guess… all of the children were eating and drinking sugar free items.
There are other “treatments” not approved and that can cause serious injury or death. These “treatments” or cures are also based on the premise that autism is a disease, the cause must be found and fought. Among them are chelation, the use of hyperbaric chambers, bleach (euphemistically called “miracle mineral solution”), antibiotics and others. Mayo Clinic has a good list of treatments and they do mention some of these “alternative” treatments (and they do say these treatments don’t work and are not approved). Unfortunately, many parents are given the idea, sometimes by professionals, that there is no hope for the future and that their children are suffering and living a life not worth living. These parents become desperate and are easy prey of charlatans. That is where the real suffering begins.