Prenatal research for autism is often encouraged. It should not be. The reality of what it leads to is much darker than many realize or care to acknowledge.
Prenatal research for autism can be a very touchy issue. It has led to some very legitimate changes in how we understand the condition. However, these findings are not worth the problems they create in autistic lives.
Prenatal Research Increases Pathologization
Prenatal research strongly implies something is a disease or damaging. Unfortunately, this connection is one that has not been investigated in a scientific capacity. As a result, my belief in this idea is rooted in the general purpose of the prenatal study. For instance, it is often done to identify biomarkers of birth defects and to create tests to target them. My view is also derived from the words of many activists and scientists who want to find treatments in other contexts.
Pathologization and stigma lead to widespread effects. In fact, 72% of autistic struggles are linked to stigma. It has also been found that autistic people leave worse first impressions with their peers than neurotypical people do. People affected by diseases, or what are perceived as diseases, are treated much differently. This is in contrast to accepting differences in other minorities by society at large.
Finally, the pathologization of autism affects society’s perception of autism overall. It is something that the anti-vaccine movement has used to their advantage to undermine public health. You can also hear much of this pathologization in language. For instance, many people talk of autism as having “symptoms” or as requiring “treatment.” Of course, this is often said by well-meaning people.
Prenatal Research Threatens the Future of the Autistic Community
My biggest gripe with prenatal research is the damage it could cause to the survival of future autistic people. This flows out of the stigma and pathologization. This is also the sole reason for my issue with prenatal research and not autism research in general. Generalized autism research has led to many important breakthroughs such as the Double Empathy Problem and continued research into how our minds work.
Prenatal research is very different. This is because it opens up ethical problems that don’t exist in general research. Of course, all research has to balance ethical concerns. However, when it relates to prenatal research, the concerns go well beyond questions of animal welfare or of “playing God.” They involve much more thorny questions, such as the value of an autistic life and of scientific advancement. Ethics in science is a very complicated, multifaceted issue.
Knowing the specific genetic cause could lead to an increased risk of abortion of the autistic unborn. In the United States, a small 2015 study found that roughly a fifth would abort in the case of a positive test. The numbers outside the US are even worse. For instance, a larger study in Taiwan found that 53.1% would terminate the pregnancy. The writings speculate that this is due to how it is perceived culturally. This would be tantamount to eugenics.
I defy the assumptions of an unlivable life“I resist” by Amy Sequenzia, nonverbal autism self-advocate and poet
Of a tragic existence
Of dreams that would never become true.
This may sound paranoid, but one needs to look no further than the Down Syndrome Community to see that the risk is very real. This is a relevant comparison because autism is often perceived as a mental handicap. The numbers are not encouraging. In the United States, the Down Syndrome termination rate was 67% between 1995-2011, although that number was likely falling at the end of that time frame. Other countries have even higher numbers such as Iceland where the rate is nearly 100%.
This is not to make a statement on the politically fractious issue of abortion. This is entirely rooted in the issue of what can occur when genetic knowledge is mixed with societal suspicion. The implications of that combination can be very severe.
Prenatal Research Threatens Other Important Funding Priorities
Besides the ethical concerns surrounding abortion, prenatal research also indirectly threatens other rights. Funding prenatal research potentially takes focus away from other important areas such as accommodation and postnatal research. This includes things such as pushing for more sensory environments. We see this in the 2019 funding report of the Interagency Autism Coordinating Committee, the subgroup of the HHS responsible for autism-related matters. In 2016, the most recent funding data, they spent just over 35% of their $364 million budget on biological questions and 24% of their funding on risk factors. Meanwhile, they spent only 10% on funding infrastructure, 5% on services, and 2% on finding ways to help autistic adults. These priorities are very skewed.
While it is hard to say where this money will go, supporting research is a major part of many organizations’ budgets. According to Autism Speaks—the most visible so-called advocacy organization—16% of their spending capacity went toward “science,” 20% went toward services to improve our lives, and roughly half went to their various awareness efforts, a topic for another day. While “science” is incredibly vague, at a minimum, $7 million of the $12 million they spent on research went to a genome survey. The 16% figure is not the problem, but the focus of the research very much is. That research money could’ve been better utilized in researching other facts of autistic life such as communication.
This money would’ve been better spent on research on other topics. Even using only the $7 million figure, almost a fifth of the funding they provided to research, services, and support went to prenatal genetic research. This represents 45% of their funding for supports and 58% of research more broadly. It is likely that this funding could have vastly improved their capabilities to support these other subjects of research.
Many will point out that autism is a wide spectrum and some people need more support than others, this is true. However, the goal should be on helping with this support. While I cannot speak for them, our focus would be better spent on helping them communicate. For example, this could be spent on speech therapy or on helping families gain assistive technologies to use such as IPads. It could also help educate the verbal on how to read the body language of the autistic person. For the verbal like myself, they could use this money to ease some of our challenges, such as sensory exhaustion or in employment.
What Prenatal Research Should Be About
Much of what I stated here is fundamentally tied to worries about societal perceptions. It is not a criticism of research in general or even prenatal research. Instead, it is a criticism of what people will end up doing with that knowledge. Science can be used for good and for ill. It is up to humanity to make sure it is used in the proper way.
My fears and worries about prenatal research also bring to light important things unrelated to the research. It illustrates the urgent necessity of proper education of what autism is and isn’t. Much of the danger is due to stereotypes and misconceptions. In a more inclusive society with a properly informed public, this article may not have been necessary. It also makes clear the importance of acceptance and destigmatization. In that kind of society, maybe autism would be something akin to sex. Something that is checked, but not something that causes anyone concern. That should be the goal we try to reach.
In a perfect world, prenatal research should work toward this end. The knowledge gained should work toward better understanding the autistic mind and accepting autistics into the social fabric. Knowledge is a beautiful thing, but it is also powerful. Knowledge is a tool just like a hammer or a chainsaw. What matters is what is done with it.
These factors work off one another. Stigma encourages future eugenics by poisoning the well of public perception of what autism is. Increased knowledge is a good thing in that it often reduces fear. I am not someone who often believes in ignorance, and I don’t here either. However, knowledge can sometimes be dangerous when the methods of obtaining it put others at risk. If future decimation of the autistic community happens, it would likely cut off further funding toward accommodations. This is because people are less likely to work around people who have a rare challenge or are different. If autistic people become rare, that may make us even more misunderstood.
Prenatal autism research creates many problems. It creates problems with funding, ethics, and further generalized social mistrust. Instead, this funding should be directed toward more important subjects like researching communication and learning. This would help to improve autistic people’s lives with none of the problems.