A new autism test misses an important point about being autistic

featured image

Tech startup LinusBio unveiled last week that it is in the early stages of developing a test that, with a single strand of hair, will help clinicians identify markers for autism spectrum disorder in newborns, long before a child begins missing milestones. A peer-reviewed study found that “a predictive algorithm detected ASD risk as early as 1 month with 96.4% sensitivity, 75.4% specificity, and 81.4% accuracy.” 

As someone who knows the history of autism all too well, I know better outcomes do not necessarily follow early diagnosis.

As company co-founder Manish Arora told NBC News, “The problem with autism is it’s diagnosed at the age of 4 on average. By that time, so much brain development has already happened,” he said. “We want to enable early intervention.”

As an autistic person, I’ve always felt incredibly ambivalent about early diagnosis. I was diagnosed around age 8. That was in the 1990s, when the modern understanding of autism as a spectrum was beginning to evolve, and not that far removed from 1980 when the Diagnostic and Statistical Manual of Mental Disorders first gave autism a separate diagnosis from schizophrenia. 

I often wonder how my life would have been different if there’d been a better understanding of autism much earlier. Girls and Black children often go undiagnosed, are misdiagnosed or are diagnosed later than their white and male counterparts.

Having some kind of diagnostic test instead of using a test of social interactions that are normed to the behavior of boys could offer a way to ensure that autistic people from marginalized communities get an accurate diagnosis.

But as someone who knows the history of autism all too well, I know better outcomes do not necessarily follow early diagnosis. Applied behavior analysis, or ABA, is considered to be the gold standard of autism therapies for children, but many autistic people object to it as harmful conditioning, and some parents have expressed regret over subjecting their children to it. I personally never underwent ABA, but many objections from autistic self-advocates, such as the belief that ABA forces autistic people to behave more neurotypically, give me serious reservations about it. Ole Ivar Lovaas, the father of modern-day ABA, co-authored work that later served as the basis for conversion therapy.

Private equity firms have played an outsize role in many autism services like ABA, causing some to worry that those firms’ concern for short-term profits have come at the expense of autistic people. Even if companies like LinusBio are not directly involved, early detection could mean subjecting autistic children to therapies that erase their innate traits before the children themselves even understand them. 

There are a number of things to consider whenever we’re presented with “groundbreaking” new approaches like LinusBio’s early detection test. 

Importantly, focusing only on “milestones” risks erasing the other characteristics of what makes autistic people themselves. This is not to say that autism does not come with impairments. It does, and many autistic people have fought to integrate autistic people into the broader disability rights movement.

Ultimately, society has focused too intensely on trying to “fix” our characteristics, those things that aren’t maladies but just make us different with a different way of experiencing the world.

Ultimately, society has focused too intensely on trying to “fix” our characteristics, those things that aren’t maladies but just make us different with a different way of experiencing the world. Autism, like any disability, can come with extraordinary impairments. But it can also mean we experience joy, love and passion in unique and exciting ways.

I see this duality in my daily life as a journalist: I can find myself overwhelmed in crowded press gaggles at the U.S. Capitol, and I don’t drive a car because of my sensory processing issues, and that makes it harder for me to travel for my job.

At the same time, my autism allows me to myopically focus on subjects, and the fact that social politeness is as foreign to me as French or Russian means I relish asking questions that my colleagues would shy away from. In that way, my autism makes me a better journalist.

Focusing too intensely on early biological markers, early testing and early diagnosis is a symptom of America’s focus on what causes autism or puts people at risk for it. Two years ago, the Interagency Autism Coordinating Committee found that in 2018, 6% of all U.S. research dollars given toward autism research went to screening and diagnosis, 44% went to understanding the biology of the disability and another 19% went toward better understanding the risk factors. Another 13% was devoted to researching “treatments and interventions.” 

After all that, only a meager 6% went to services for autistic people, and just 3% went to “lifespan issues” — even though autistic people are adults far longer than they are children and we should all support the idea of autistic people living long, happy lives. 

Earlier diagnosis is not inherently bad, nor is a focus on biology inherently wrong. Those avenues of research can help find solutions to the impairments autistic people face.

But they are only the first step toward building a better world for autistic people. As much as neurotypical people tend to find autistic people’s tendency to be single-mindedly focused on a topic annoying, it is they who seem incredibly focused on the biology of autism and how to detect it early, rather than creating a system that supports autistic people throughout life. And here we are giving them plenty of hints that we have other priorities. 

Eric Garcia

Eric Garcia is the senior Washington correspondent and bureau chief for The Independent. He is the author of “We’re Not Broken: Changing the Autism Conversation.”

Read More

Share on Google Plus
    Blogger Comment
    Facebook Comment

0 Comments :

Post a Comment