Introduction to Autism Controversies

Autism is extraordinarily controversial. It's not just that people disagree about the best treatment for the disorder: they disagree on whether or not autism actually is or should be a disorder, what kinds of autism there are, and on the causes of autism. They disagree about how children with autism should be educated, how adults with autism should be housed, and whether advocates should be working toward acceptance or a cure.

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There are several key reasons for this extraordinary level of disagreement.

  1. The diagnostic criteria for autism have changed radically over the course of the last two decades; this makes it very tough to define who is (or was) autistic, and how many people have (or should have) an autism diagnosis.
  2. There is no medical or biological test to determine whether a person has autism.
  3. People with autism are extraordinarily diverse; there is no "typical" person with autism, and symptoms vary radically.
  4. There is no treatment or medication that reliably treats or alleviates core symptoms in everyone.
  5. While there are a few known and accepted causes of autism, the vast majority of people with autism will never know exactly why they have the disorder.

Here are some of the major disagreements in the autism world, along with a little background information about each.

Disorder vs. Difference

Starting in 1908, autism was considered to be a rare and severe form of schizophrenia marked by a nearly-complete separation from reality. It wasn't until 1980 that autism was described as a separate disorder not related to schizophrenia—a developmental disorder rather than a mental illness.

In 1994, Asperger syndrome was added to the diagnostic manual—and suddenly individuals with high IQs and strong verbal skills were diagnosed as having an "autism spectrum disorder."

Today, the Autism Spectrum includes a huge range of people, some of whom are severely challenged but many of whom are brilliant and accomplished. This strange evolution led to legitimate disagreements among parents, self-advocates, and practitioners who disagree about what autism really is.

Should autism be celebrated as a difference that can lead to extraordinary insights? Those who advocate that perspective claim that historic celebrities such as Einstein and Mozart would have been diagnosable with autism today. Or should autism be treated as a disorder that should be treated or, ideally, cured? Those who advocate that very different perspective point to the large number of people on the autism spectrum with low IQs, little or no spoken language, and little ability to function in society.

What Causes Autism?

For a while, everyone seemed to have their own theory about the causes of autism. Many (urged on by celebrities like Jenny McCarthy) believed that an "epidemic" of autism was being caused by too many vaccinations given too soon. This idea has by no means died out, despite the fact that it has been studied and debunked time and time again. The reality that vaccinated children are no more likely to be autistic than unvaccinated children doesn't seem to hold much water with "antivaxx" advocates.

Other ideas about the causes of autism have ranged from (among other things) airplane contrails to anti-flea powders to cell phones to cable television. These particular ideas arose, to a large degree, because it was possible to compare a rise in their use to a rise in autism diagnoses. It is perfectly true that autism diagnoses rose at about the same rate as cell phone ownership. This, of course, proves nothing—but to many people, the thought was "there's no smoke without fire."

Today, many people continue to posit new ideas about the causes of autism. Vaccines are still high on the list, though researchers seem to have zeroed in on a combination of genetics and environmental challenges such as exposure to certain prenatal medications.

Best Autism Treatments

There is no cure for autism, but there is an incredible range of treatments and therapies available for every price point, philosophy, and preference. Some are carefully researched; others are fly-by-night; still others are somewhere in-between. There are tremendous disagreements about which treatments are most effective, most appropriate, most humane, most respectful, and safest.

One of the most significant splits in treatment theory occurred during the 1990s with the belief that vaccines (and trace amounts of mercury in one particular vaccine) caused the onset of autism. The result: treatments intended to "chelate" or remove heavy metals from the body. These treatments, usually used for lead poisoning, are typically provided in a clinical setting—but parents did and do provide chelation at home with some risk of injury. Other risky and questionable treatments include hyperbaric oxygen chambers and stem cell therapy. There are even (frighteningly) some who advocate a form of enema that contains bleach.

In addition to these more extreme approaches, there are legitimate differences of opinion as to whether behavioral (ABA) therapy is more appropriate than development therapies such as Floortime or Play Therapy. While behavioral therapy has been extensively researched, some self-advocates and many parents feel that it is at worst cruel and at best inappropriate. In fact, the two camps have come much closer over the years: some forms of behavioral therapy are now very similar to developmental approaches.

There is also significant controversy over dietary therapies. Some research suggests that children with autism are, indeed, more susceptible to gastrointestinal issues which can lead to pain and discomfort. Does that mean putting autistic children on special diets can "cure" them? The answer is controversial. Most experts say no, but appropriate diets can alleviate pain and improve symptoms which leads to the assumption that the food was the source of the autism in the first place.

Education and Autism

The IDEA law states that children with disabilities should be taught in the "least restrictive" environment. But "least restrictive" is a moving target. Parents and educators disagree as to whether it's a good idea to include a child with autism in a typical educational setting if he's academically capable but exhibits behavioral challenges—or vice versa. Often, the inclusion controversy escalates into mediation and even lawsuits as parents and school district officials battle it out.

Other disagreements relate to what autistic children should be taught. If a child is capable of learning academically, should his or her major focus be on academics or on the social/communication skills she'll need to navigate the community? Parents and schools disagree, making it hard to find and maintain the right public school setting.

Similarly, some parents and schools believe that autism-only educational settings are ideal. These settings are physically set up to lessen sensory challenges and are staffed by autism experts who can provide autism-specific programs. But of course, such settings deny autistic children the opportunity to participate in their own communities, engage with typical peers, or learn what it means to be a typical kid.

Adult Personal Support

Relatively few autistic adults—even those with strong intellectual skills—are capable of living completely on their own without any form of financial or personal support. Most autistic adults require significant support with everything from money management to shopping to cleaning to social involvement. Should autistic adults live in the general community? Or in group settings? Who should pay for their sometimes-extensive needs?

All of these questions are addressed on an individual and state-by-state basis. While some states provide liberally for autistic adults, offering funds for a variety of housing options and supports, others provide almost nothing. Political disagreements over funding for adults leads to extreme inequities in what's available at what quality for which individuals.

Complicating this controversy is the reality that "people with autism" can be college graduates or individuals unable to speak, read, or add. Yet even well-educated adults on the autism spectrum have challenges that can make full-time employment, household management, and daily interactions extremely challenging.

It's hard to make the case outside the autism community that a college graduate can't cope with the demands of daily life, even though in many cases it's simply a statement of fact.

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