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ASPartOfMe
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12 Jan 2023, 7:40 am

Why a new autism diagnosis test can do more harm than good for autistic children by Eric Garcia

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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 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.

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. 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.

It is 2023. I thought we would have more up to date on Autism spending priorities then from 2018.


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carlos55
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12 Jan 2023, 3:13 pm

What's the obsession & point in early diagnosis anyway, its not like anything can be done about it unless its to promote useless ABA.


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13 Jan 2023, 12:48 pm

I had an early diagnosis and I suffer with my mental health because of it. I wish I was like 99% of other mild/high-functioning Aspie females who go all through childhood freely without being noticed as on the spectrum. All my childhood consisted of was assessments, appointments, psychiatrists and social workers. I felt like I was a huge problem or like I was insane or something, when all I wanted to be was a normal child like all my cousins and classmates.


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carlos55
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13 Jan 2023, 2:47 pm

Joe90 wrote:
I had an early diagnosis and I suffer with my mental health because of it. I wish I was like 99% of other mild/high-functioning Aspie females who go all through childhood freely without being noticed as on the spectrum. All my childhood consisted of was assessments, appointments, psychiatrists and social workers. I felt like I was a huge problem or like I was insane or something, when all I wanted to be was a normal child like all my cousins and classmates.


Your probably right. Of course being invisible autistic is a luxury not every autistic has, i believe however for borderline Aspies or BAP people with "seemingly normal lives" sometimes ignorance is bliss.

When you get diagnosed you start thinking and acting there is something wrong with you and life can go downhill.

But before anyone asks no i don't believe in any of that autism harmless natural difference BS either.


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15 Jan 2023, 12:29 pm

I doubt there is just one answer that fits all Autistics.

"If you've met one Autistic then you've met one Autistic."

My personal guess would be that an early diagnosis would be useful for an individual with severe symptoms. A better understanding of their problem would seem like a good idea.

But with someone with mild symptoms I'm inclined to think that a late diagnosis is better. Let them just be "strange" for a few decades while they build their credentials then, optionally, get a diagnosis. At that point the individual should be better able to withstand negative repercussions due to the diagnosis. If they are identified as Autistic early then some opportunities might be taken away and people will prejudge them.


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ASPartOfMe
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15 Jan 2023, 10:59 pm

carlos55 wrote:
What's the obsession & point in early diagnosis anyway, its not like anything can be done about it unless its to promote useless ABA.

Promoting ABA is the whole point. The theory is that the genetically predisposed process of becoming autistic can be stopped by ABA. Most of this “brain wiring” happens in the earliest part of life, so if this is going to work it has to be done as early as possible. In other threads I have quoted people being open about this.


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“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


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15 Jan 2023, 11:45 pm

I definitely think there needs to be a more balanced distribution of the budget - more help for the current population.
It just might focus the research process if science made more of an effort to understand the adult autistic community.



carlos55
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16 Jan 2023, 11:27 am

ASPartOfMe wrote:
carlos55 wrote:
What's the obsession & point in early diagnosis anyway, its not like anything can be done about it unless its to promote useless ABA.

Promoting ABA is the whole point. The theory is that the genetically predisposed process of becoming autistic can be stopped by ABA. Most of this “brain wiring” happens in the earliest part of life, so if this is going to work it has to be done as early as possible. In other threads I have quoted people being open about this.


This obsession exists in non ABA countries like the UK. Maybe they are just mindlessly following the US without question

There is some evidence that early intervention can influence things that was discussed on WP over a year ago i think

https://www.manchester.ac.uk/discover/n ... -at-age-3/


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