Assigning Cause, Seeking Treatment: Autism Spectrum Disorders

Humans have the natural instinct to make sure their offspring are safe and healthy, and when a child is not what would be considered 'normal,' a crusade begins to make them so. We want an exact cause, the perfect cure. Many neurological disorders are not as cut and dry as giving a pill and making it all better. Autism is exactly that. Autism is a spectral neurological disorder that effects the development of social interaction, communication, and is often marked by an interest in repetitive activities. Due to its spectral nature, it's difficult to pinpoint an exact cause or assign the 'right' treatment for each individual affected. Different groups of people appoint varying amounts of focus to the multiple theories of causes and treatment methods.

The two causes of autism most often mentioned are vaccines and genetics. Thimersol is a form of inorganic mercury that is used as a preservative in some vaccines. Some believe that the mercury in these vaccines given to young children causes autism. The web site for the National Autism Association spends paragraphs and pages discussing how mercury poisoning from vaccines with Thimersol is the cause of autism, comparing the symptoms of the two, while only mentioning genetics in one paragraph (1). Although mercury poisoning and autism do have some similar symptoms, does not mean that they are the same thing. According to the Centers for Disease Control and Prevention, current research does not point to a causality relationship between vaccines and autism, and that genetic causes are much more likely at the root of autism (2).

Why then would the National Autism Association place so much emphasis on vaccines? I think it stems from a desire to place some sort of outside blame for the disorder, which makes sense considering parents of autistic children are this site's target audience. As a parent, it would be hard to accept the fact that you have child with a neurological disorder, the cause of which is within the child. It would be much easier to place the responsibility on an outside source, such as vaccines. Researchers have found some genes associated with autism but not a specific 'autism gene,' so even within the idea of genetics causing autism, there is not one region on one chromosome to point to (3). In spite of the strong evidence pointing towards genetics as the cause of autism, the need for a specific external cause directs focus to the ill-supported theory of vaccines causing autism.

Looking for the cause of autism may seem daunting, but trying to treat it can be even more so. I found over 15 different approaches to the treatment of autism on the web, and that's not including all of the different methods for behavior modification. The only aspects of treatment that were agreed upon by the majority of methods were that early intervention was key, and at least 25 hours/week of therapy was optimal (4). There are three veins of treatment: learning and behavioral, biomedical, and complementary. The first is confined much more to school settings than the other two. Biomedical treatments include special diets, vitamin supplements, and using psychiatric medications (5). About 25-40% of parents of autistic children use some sort of special diet, particularly gluten free diets, in their treatment program, while 10-30% of parents use vitamin supplements such as vitamin B and cod liver oil (4). Psychiatric medications such as serotonin re-uptake inhibitors (Prozac), stimulants (Ritalin), and anti-psychotics (Zyprexa) have all been used to help with the behavioral problems associated with autism (5). Up to half of parents with autistic children use these sorts of drugs (4). Complementary treatments include art, music, and animal therapies. It should be noted that all of these biomedical and complementary treatments only help with some of the behaviors of autism, not the underlying neurological processes.

The appeal of these treatments is obvious; it's like giving the proverbial magic pill. These sorts of therapies are attractive because they are something that a parent can do for their autistic child that requires relatively little time-giving him his pill and vitamins in the morning, making sure dinner is made with gluten-free pasta, taking him to ride a horse. A parent wants to do whatever they can for their child, so these more simple treatments can help with the parental feeling of needing to act.

Out of all of the methods of behavior therapy, I've worked with social stories, sensory integration, and Picture Exchange Communication System (PECS) in a public Early Childhood Special Education center (ECSE). The six five-year-old boys I worked with were all highly functioning autistics; only one could still not speak. As far as I could tell within the classroom setting, all three therapies seemed to work. One boy after coming into school from the bus would sit in a big stretchy blue swing that applied pressure all around his body. After a few minutes, he would be much more grounded and ready to begin his day. Another couldn't communicate until he came to this ECSE center and learned to use PECS cards, little square with pictures and words on them. He could speak, but only if the sentence was spelled out by these cards. Social stories was a blocked out period of the day when the teachers would use puppets to act out social situations which the appropriate responses, for example, what to do/say when someone greets you. Most of the boys showed improvement in their behavior and social interactions during the few weeks I was there, implying that these therapies do work in what they set out to do, but the grey area still exists as to why some therapies work for one child but not another.

Although there are many types of treatments for autism, none have been scientifically tested. It would be difficult to find controls for such experiments. A parent probably wouldn't agree to an experimental therapy if that parent thought her child would be receiving sub-par therapy. Dr. Lovaas of the Lovaas method has said that his program has been scientifically proven to be successful, but no one has been able to repeat his results. Also, parents tend to combine different therapies at the same time, so it would be nearly impossible to say which treatment causes or is even related to whatever improvements in behavior of an autistic child (4). This again goes back to the human desire to do the best by your child by trying multiple treatments.

But what if your child rejects your chosen therapy? Says that it is mean, bordering on abuse? Well, that is what a group of autistics are currently saying about some of the current therapies. There is an entire movement of autistics who say that they don't need a 'cure;' this is they way they are wired, so let them be autistic, to "act autistic." They feel like some behavioral therapies like Applied Behavior Analysis suppress an autistic's "natural form of expression." The behaviors of autistics that are often seen as negative are ways of communicating. Like if you teach an autistic child not to throw a tantrum in a grocery store, he's still experiencing his pain from the throng of people and the fluorescent lighting, so you're teaching him to no longer communicate his pain (6). The Institute for the Neurologically Typical is a web "site of autistic outrage," which outlines neurotypical syndrome to be a "neurobiological disorder characterized by preoccupation with social concerns, delusions of superiority, and obsession with conformity" (7). It's a humored look at those of us who consider ourselves 'normal' and possibly superior to those with neurological disorders. Parents of autistic children are running around looking for cures, but think of the adults who were once children, who now don't want to be cured.

With over 10^12 neurons, we are all wired differently, so what if autism is just a different form of wiring? Are autistics really people who need to be 'cured?' Considering how much time on the account of parents and teachers and research by scientists is going on about autism, there are obviously a lot of people who think there needs to be a cure or at least some answers about autism. If we define autism as something that doesn't need a cure, then we would be going against the parental desire to have 'normal' children. Even so, I think the desire to help your child can make it easier for a parent accept that this is the way their child is, and to find ways to work with their alleged disability. Parents want to help their children survive, a biological construct that has gotten us this far.

WWW Sources
1. National Autism Association. http://www.nationalautismassociation.org/ (This is their home page.)
2. Centers for Disease Control and Prevention. http://www.cdc.gov/od/science/iso/concerns/mmr_autism.htm
3. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/autism/detail_autism.htm (An Autism fact sheet, with links to other resources.)
4. New York Times. "To Treat Autism, Parents Take a Leap of Faith." http://www.nytimes.com/2004/12/27/health/27autism.html?ex=1172638800&en=8ad6d0e83d358cd5&ei=5070
5. Autism Society of America. http://www.autism-society.org/site/PageServer?pagename=about_treatment_home (Description of various treatment methods.)
6. New York Times. "How About Not 'Curing' Us, Some Autistics Are Pleading." http://www.nytimes.com/2004/12/20/health/20autism.html?ex=1172638800&en=5bc3cff81ee2ce8f&ei=5070
7. Institute for the Study of the Neurologically Typical. http://isnt.autistics.org/ (This is the home page. I would recommend taking the Neurologically Typical Screening Test.)