The skepdick got to write a paper in Psych class about controversies in autism. I suppose I could have been harsher on the anti-vax people, but so be it. Enjoy.
Autism Spectrum Disorder (ASD) is a range of neurodevelopmental disorders characterized by five separate diagnostic criteria. The most recent edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) lists those criteria as:
Persistent deficits in social communication and social interaction.
Repetitive patterns of behavior, interests, or activities.
Symptoms must be present in early childhood.
Symptoms must cause clinically significant social impairment.
Symptoms are not better explained by intellectual disability or global developmental delay. (DSM-5., 2013, pp. 50-51)
As a spectrum, symptoms are further categorized into three levels of severity. With level 1 ASD the individual “requires support”, level 2 “requires substantial support”, and level 3 the individual requires “very substantial support” (DSM-5., 2013, p. 52).
Autism was first described in 1943 by child psychiatrist Leo Kanner, who identified an unusual pattern of symptoms in children, one of which was the child’s desire to be alone, thus naming the condition, autism, after the Greek work for self (Grandin, 2013, p. 5). Some of the criteria Kanner developed is similar to the DSM-5 criteria we use today, but it took quite a few years before we understood even the basics of autism and there were many controversies along the way.
There have been five editions of the DSM starting with DSM-I in 1952 and ASD has evolved dramatically since that first edition. The DSM-I contained just a single reference to autism and then only as it related to children’s psychotic reactions. In 1968 when the DSM-II was released, there was no mention of autism at all. In the 1970’s, David Rosenhan’s experiments, the gay rights movement, and people’s growing appetite for medication forced psychiatrists to reassess the DSM and reclassify disorders in a more rigorous manner. The DSM-III in 1980 listed autism as infantile autism disorder and gave six criteria for its diagnosis. The DSM-IIIR revision in 1987 changed the name to autistic disorder and expanded the criteria to sixteen. In 1994, the DSM-IV listed five separate pervasive developmental disorders including, autism disorder, Asperger’s syndrome, PDD-NOS, Rett syndrome, and childhood disintegrative disorder. This expansion led to the reframing of autism as a spectrum, something that was finally addressed with the DSM-5 which lists only autism spectrum disorder encompassing many of the previous separate disorders and covering a range of symptoms from the severely disabled to what most people call high-functioning (Grandin, 2013, p. 5-18).
The name ASD has evolved over time and will continue to evolve in the future since I suspect, as we learn more about the biological causes of autism, we may devolve away from the concept of a spectrum back into more specific classifications. As for today, controversy exists even at the most basic level regarding ASD, as in what to call children with this disorder. Some believe the phrase, “autistic children” not to be politically correct and prefer the phrase, “children with autism” (Schreibman, 2005, p. 5). Seems like the difference between the People’s Front of Judea and the Judean People’s Front. I’m happy as long as it’s not what Matt Dillon calls them in There’s Something About Mary.
Pedantics aside, with autism now a spectrum there is quite a lot of diagnostic controversy, especially since this is a phenomenological diagnosis based on observations of behavior rather than on a specific cause or mechanism. For example, problems may arise when parents are told their children have ASD based on observations of a child’s verbal communication deficits or insistence on always eating the same food. Years later the parents may find there was no ASD present at all and the child was just acting like a child. Misdiagnosis is just the tip of the iceberg, it’s always easy to cherry pick some traits that a child may have and diagnose them with ASD.
It should be no surprise that as we’ve broadened our definition of ASD over the last seven decades to include more and more types of symptoms, we should expect to see an increase in ASD diagnoses. Which we have. In 2002 it was estimated in the United States that 1 in 152 children aged 8 years could be identified with ASD (Prevalence, 2007, pp. 12-28). A 2008 study found that number had climbed to 1 in 88 children (Baio, 2012, pp. 1-19) and in 2010 to 1 in 68 (Baio, 2014, pp. 1-21). Many people are concerned about this so called epidemic of ASD and are worried the numbers will keep climbing. They may be right. A recent study in South Korea, where more children are tested for ASD than in the U.S., compared DSM-IV diagnoses to DSM-5 and found no significant difference in prevalence with the new criteria, but also found the rate of ASD to be better than 1 in 50 (Kim, 2014, pp. 500-508). It’s likely the rate of ASD diagnoses will rise to equal South Korea’s 1 in 50, but does this mean we have an epidemic with way more autistic children today than there were a decade ago?
No. What’s happening is not an epidemic of autism; the explanation isn’t simple, of course, but scientists suspect the same number of autistic people are around now as were 100 years ago, we’re just getting better at identifying them. We’ve seen how the diagnosis of ASD has expanded to include a spectrum of severity to include many children who, in the past, would not have been diagnosed with even a mild form of ASD or would have been diagnosed with a different disorder. If a diagnosis of ASD has been replacing other diagnoses that children used to be receiving, we should see a decrease in rates of “competing” diagnoses. In fact we do, a 2009 California study found that 25% of new diagnoses of ASD were patients whose prior diagnosis was solely that of mental retardation (King, 2009, pp. 1224-1234). We also have a better educated health care system and greater awareness by parents providing higher chances of early diagnosis. In addition, the most recent prevalence study cautions that ASD may be under-reported by certain ethnic groups or by groups with disparities in access to health services (Baio, 2014, pp. 1-21) which also suggests the rate will continue to climb.
Diagnosing ASD from a phenomenological basis causes controversy and confusion, so why don’t we base a diagnosis on a specific cause? Although the specific cause is still unknown, scientists suspect ASD to be mostly genetic, specifically polygenic, but also associated with certain environmental factors, specifically obstetric complications (Glasson, 2004, pp. 618-627). This theory is based on twin studies showing up to a 90% familial recurrence of ASD and birth studies showing high correlations of ASD with treatments during labor including induction and augmentation (Risch, 2014).
Popular opinion has not always been for a biological cause, in fact the first person to describe autism, Kanner, believed autism was a result of bad parenting. He was a proponent of the psychodynamic theory, but over the years rigorous application of the scientific method has shown us that ASD is neurologically based rather than psychogenetically based (Schreibman, 2005, p. 53). This didn’t happen overnight, however, and many years of ineffective treatment were the result of this false premise. Viennese psychoanalyst Bruno Bettelheim, who took up the bad parenting mantle from Kanner, insisted the cause of ASD was solely that of the parent and he popularized the term “refrigerator mother” to describe the cold and unloving personality of the mothers of autistic children, even though many of the mothers were nothing of the sort (Schreibman, 2005, p. 78). Bettelheim’s theory was that the child’s withdrawal into autism was a response to the negativity of the mother and was her fault. The mid-twentieth century marked a time when psychodynamic theory still held sway, but as is typical with any theory that is not backed by scientific evidence it has been wholly discredited although as we’ll see sometimes scientific evidence just isn’t enough.
In 1998 Andrew Wakefield published a report linking the MMR vaccine to autism causing parents around the world to panic and stop vaccinating their children out of fear. Children are vaccinated for many things in the first few years of life and this correlates to the time when ASD is first diagnosed. A study suggesting causation would certainly be meaningful except that Wakefield’s study was horribly inept. His laboratory was poorly run, his sample size was inadequate, and he was being paid by lawyers who wanted to sue vaccine companies. His report was retracted in 2004 and his medical license revoked in 2010, but the damage had been done (Ciccarelli, 2015, pp. 325-326).
People tend to believe what authority figures like Dr. Wakefield tell them, even when that advice is later shown to be based on lies, but for some reason many people also believe celebrities when they dole out medical advice. It doesn’t help when someone like Jenny McCarthy writes a book about her experience with her supposedly autistic child and how his autism was definitely caused by a vaccine because he received a shot around the same time she noticed ASD symptoms. In her book, Mother Warriors, she writes, “We vaccinated our baby and SOMETHING happened. SOMETHING happened. Why won’t anyone believe us?” and “Who needs science when I’m witnessing it every day in my own home? I watched it happen.” (McCarthy, 2008)
Of course we need science, but anecdotes and personal experiences are certainly not science, and we shouldn’t rely on them for the truth. The results of a vaccine meta analysis of over a million children should count as real science.
Five cohort studies involving 1,256,407 children, and five case-control studies involving 9,920 children were included in this analysis. The cohort data revealed no relationship between vaccination and autism…or ASD…, nor was there a relationship between autism and MMR…, or thimerosal…, or mercury (Hg)… Similarly the case-control data found no evidence for increased risk of developing autism or ASD following MMR, Hg, or thimerosal exposure… Findings of this meta-analysis suggest that vaccinations are not associated with the development of autism or autism spectrum disorder. Furthermore, the components of the vaccines (thimerosal or mercury) or multiple vaccines (MMR) are not associated with the development of autism or autism spectrum disorder. (Taylor, 2014, pp. 3623-3629)
This type of study has been replicated numerous times and not one legitimate study has found any link between vaccines and autism. The result of this persistent myth of autism being linked to vaccines has led to measles epidemics in countries where measles had been all but eradicated and to the death of hundreds of children (Ciccarelli, 2015, pp. 325-326).
Controversies also abound in ASD treatments. While the psychotherapists were treating the wrong cause of ASD with no success, mistakenly convinced the “refrigerator parent” needed help not the child, other misunderstandings about the nature of autism were coming to the forefront. Douglas Biklen believed autistic people were intelligent enough to communicate, but were unable to do so because they lacked the motor skills for speech. He brought a treatment called Facilitated Communication (FC) to the United States and was initially hailed as a miracle worker since autistic people were suddenly communicating. Nothing more than a Ouija board style of treatment, FC supposedly allowed autistic individuals with severe communication disabilities to work around their motor difficulties and use a facilitator to communicate from inside their shell of autism. A facilitator, usually a therapist or friend, would help the autistic person pick out letters on a keyboard to spell out sentences, but when scientists began testing FC, they found the facilitator had been doing all the communicating, consciously or unconsciously, and the autistic individual had no involvement at all. Douglas Biklen, in a classic case of special pleading, claimed FC only works when it’s not being tested, which is like saying you can make a thousand free throws in a row but not if there’s anyone there to see it happen. Many false allegations of abuse were brought up through FC, all invented by the facilitator, causing emotional hardship and devastation in families that were already suffering from dealing with debilitating cases of ASD (Schreibman, 2005, pp. 205-213).
In the 1960’s behaviorists entered the fray and suggested simply working to modify the behavior and ignore the cause. In fact, empirical studies have shown behavior therapy to be the treatment of choice (Schreibman, 2005, p. 133), but it was originally controversial since it contradicted the psychodynamic model that was popular at the time and because many of the early forms included punishment and electric shocks. Using operant conditioning on handicapped children, as you would train a dog, was off putting to people (Schreibman, 2005, p. 143), but, ultimately, rewarding good behavior with positive reinforcement and patiently teaching a child step by step to interact socially or to stop self-injurious behavior isn’t much more than putting a band-aid on a gunshot wound. Describing the symptoms and behaviors and then treating those behaviors isn’t going to have the same effect as treating the source of the symptoms. Since we still don’t know the cause of ASD, it can be very frustrating for patients and caregivers alike in trying to treat the symptoms and seeing very few positive results.
What controversies have been decided? We know ASD is not caused by parental behavior as was once believed and is not caused by vaccinations, although people’s refusal to follow the scientific method means the debate rages on, as one-sided as it may seem. The etiology remains to be unlocked and until it is people will be led down many false paths, some helpful, some not. As we learn more about ASD, even the name itself will likely evolve to reflect new knowledge, treatments will improve and become individually tailored for specific autistic traits and symptoms, and we’ll begin treating not just the behavior but the underlying reason for it.
Controversies always erupt when things are poorly understood and, even when the science seems undeniable, people will still choose not to believe the evidence, especially when their emotions get in the way, an easy thing to allow when a parent sees their child’s mental processes slip away from the norm. This raises an interesting question, what exactly is a “norm?” The DSM-5 lists diagnostic criteria that include deficits and the criteria are intended to be a list of “bad” symptoms. Is autism really a disorder or just another way of being human? There certainly are benefits to being autistic that non-autistic people don’t share, perhaps if we concentrated on identifying strengths rather than weaknesses, people with ASD could lead better lives and more easily integrate with society.
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