Autism ethics: Is search for cure the right goal?

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When a person has an illness, we tend to assume they want a cure. But when it comes to autism spectrum disorder, a common neurodevelopmental condition, proponents of the autism rights movement want to halt efforts to develop a cure. Instead, they argue, society needs to be cured of its narrow idea of what constitutes acceptable behavior and a normal mind.

Some say that just like homosexuality — once viewed as a disorder in need of intervention and prevention — autism will eventually come to be viewed as merely a different way of being. Unlike homosexuality, however, autism often is accompanied by a broad constellation of health problems that can affect nearly every system of the body.

The anti-cure crowd’s perspective predominantly represents those on the high-functioning end of the spectrum, such as those with Asperger’s syndrome. For this reason, it may overlook the needs of individuals on the far end of the spectrum, along with the needs of their families and caregivers.

Most people with Asperger’s are able to somewhat mask their symptoms so that only family members are aware of their disorder. Unlike those with more moderate to severe forms of autism, many with high-functioning autism are not diagnosed until later in life. They are negatively impacted by their illness, especially when it comes to social communication, yet until they receive a diagnosis their differences might be chalked up to “quirkiness”, social awkwardness, shyness, or antisocial personality traits.

In contrast, individuals with more severe autism are prone to chronic digestive problems, intellectual disabilities, sensory sensitivities, severe anxiety, sleep disorders, self-injurious behavior, and so on — all of which can significantly disrupt everyday functioning. Many will remain in the care of their families or in assisted living communities for their entire lives, and many will never be employed in conventional jobs. Those with Asperger’s, on the other hand, tend to have lives that are indistinguishable from the lives of their non-autistic peers.

Cost of autism: Personal, family and economic

One in every 68 children in the United States is diagnosed with autism spectrum disorder, up from the 1970s and 1980s when only one in every 2,000 children was diagnosed. While more males than females are diagnosed, with a ratio of 4 to 1, the sex difference could be the result of genetic factors, hormonal differences, and the fact that many females with high-functioning autism remain undiagnosed.

Much of the increase in autism diagnosis is due to heightened awareness about the disorder and improvements in diagnostic techniques. Some have claimed that this explanation cannot account for the entire spike in diagnoses, making the etiology of autism a particularly controversial topic in some circles. The impacts of autism, however, are not as hotly debated.

People with autism have a 433% increased risk of suicide attempts, a 123% increased risk of depression, a 69% increased risk of obesity, and a 42% increased risk of hypertension, when compared to non-autistic populations. Those with autism have signs of chronic inflammation, indicating ongoing immune dysfunction which may underlie many of their accompanying psychiatric and medical ailments. Recent research shows that those on the autism spectrum die an average of 16 years earlier than their non-autistic counterparts.

Regarding the cost to families, a 2012 research review by Jeffrey S. Karst and Amy Vaughan Van Hecke speaks of the “plethora of difficulties in caregivers [of autistic children], including decreased parenting efficacy, increased parenting stress, and an increase in mental and physical health problems compared with parents of both typically developing children and children with other developmental disorders.”

They go on to discuss the high rates of divorce in these families and how the benefits of adequate intervention are often outweighed by the burdens of having a child with autism.

Megan McArdle, writing for The Atlantic on the impact of autism on families, says:

“Working on their children’s behalf becomes a full-time job. One parent, often the mother, either stops working or works less hours, in order to manage the educational and therapy [needs] of the child. She must shuttle the child long distances to find the right services. She must navigate the health care bureaucracy. She must meet frequently with teachers and constantly negotiate with the school district to get the therapy that their children need.”

Economically speaking, the lifetime cost for an individual on the autism spectrum with intellectual disability is a whopping $2.4 million, and $1.4 million for high-functioning autistic individuals. This means that the estimated cost to the United States alone is around $236 billion each year.

While most would agree that neurodiverse perspectives are welcome and that more could be done to counteract harmful myths and stereotypes about autism, it is impossible to deny the impact of autism on the individual, their families, and society as a whole. The development of evidence-based, voluntarily-administered cures for autism would improve the lives of millions.

Kristen Hovet is an American-Canadian journalist and writer who specializes in the areas of psychology, health, science, and the intersection of sociology and culture. Follow her on Facebook or Twitter at @kristenhovet

  • Sherri Dodd

    People are entitled to support the search for a cure, but they are not entitled to use inaccurate and faulty evidence to support their arguments. The voices of “high functioning” autistics have been summarily dismissed on the premise that they do not face severe (enough?) challenges in their daily lives, which is blatently false. The very idea that researchers believe they can choose to ignore the concerns of an entire segment of the autistic population is beyond outrageous. Furthermore, the argument that a cure should be sought due to the burden autistics place on their families is horrifically stunning – do we seek a cure for pediatric cancer solely because mommy loses sleep? Are we implying there should be some form of ranking system that links funding to the rate of family burden? This line of thought feeds the narrative of autistics as “less than”, actively discourages acceptance of all individuals with abilities that differ from “the norm”, and is simply unacceptable. Any conversation around a “cure” must be addressed very carefully, given that we know autism is an inherited, genetic trait present at birth, has produced some of the most brilliant and talented minds known to mankind, and that many adult autistics have taken a strong stand against it. The enormous ethical implications cannot be easily ignored. Meanwhile, efforts to mitigate the physical and mental health challenges that can often accompany autism would be welcomed, as well as continued research into overcoming communication barriers for non-verbal autistics. Conversation about a cure can certainly be had, but absolutely nothing about us, without us.

    • Thank you Sherri, you spoke for many of us.

      • Sherri Dodd

        Thanks for the encouragement tahiti! I am trying.

  • Dave Bailey

    Excuse me if I’ve missed something, but I think the answer to the actual question is easy; yes, you look for a cure, and those who want it can have it, those who don’t can turn it down. As for those who are uncommunicative and unable to make such a decision, it rests with their relatives, caregivers, doctors, or whoever. You cannot, morally, tell science to not search for an answer to any problem, whether it be autism or the origin of the universe. You may be able to place legal restrictions, but many scientists worthy of the epithet would probably ignore it and keep working. The social implications that come after the initial question could become a very messy discussion, but that is the concern of social science, not medical science.

    • Sherri Dodd

      Thank you for contributing thoughtfully to this conversation. There are one or two nuances that need to be taken into consideration.

      1) Non-communicative does not imply incompetent. With new technology giving voice to autistic people deemed to be “non-verbal”, many people have been stunned to find out that so-called “severe” autistics not only have average to above-average intelligence, but they also have a lot to say. Always presume competence until there is proof of intellectual disability, and then follow the existing laws as to what kinds of decisions can be made on behalf of someone who is intellectually impaired.

      2) Autism in and of itself, is NOT regarded as a problem among most autistics, it is regarded as part of their self-identity, and thus is NOT something to be cured. Comorbid conditions, on the other hand, pose significant challenges, not just for autistics, but for many other people as well. Autistics would welcome cures for comorbid conditions, but not at the expense of their identity. Among medical professionals, seeking the ability to erase someone’s identity would most certainly pose an ethical and moral dilemma. The “cure debate” centers on this issue, as well as …

      3) How money raised on behalf of autism gets spent. Autistics want the money to be allocated towards providing support services instead of towards finding a “cure”, which many do not view as being valid or necessary. They believe valuable resources that could have an immediate impact on quality of life are being wasted.

  • ProfessorAlbee

    As a high-functioning autistic man AND a proponent of ‘neurodiversity,’ i have always felt that as long as the ‘quirks’ as exhibited – however innocently – by autistic individuals do not pose any discernible harm or threat to others – especially ‘neuro-typicals’ – and/or themselves, such individuals SHOULD NOT be subjected to ‘social ostracism.’ Moreover, the curing of autism via germ-line gene therapy could very well open up a “Pandora’s box.” i am now entirely convinced that autism happens to be the next phase in the evolution of mankind.