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Asperger's/PDD

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Jilly_in_VA

(11,411 posts)
Mon Jan 9, 2023, 02:04 PM Jan 2023

I'm a psychologist with an autistic child. A new diagnostic aid leaves me conflicted. [View all]

Despite the fact that childhood autism diagnoses have more than doubled in the past 20 years, the condition can be difficult to spot. It can take years to manifest in such a way that it is noticeable, and even once it becomes so, it can still look wildly different — from children who can’t speak and who stim (using repetitive motor movements or speech) to those who might just have trouble figuring out social cues. I know because it was not until my daughter Dahlia was 4 years old that I came to firmly believe there was something clinically “wrong” with her. Now a new test is being developed that can help clinicians spot autism in children earlier than ever. It is the brainchild of researchers from a new startup called LinusBio, who say the new technology can find markers of risk in a hair sample long before symptoms appear.

While it’s still in the early stages and will need federal approval, as a scientist, I am tremendously excited by this news. Any breakthroughs in the science of autism are welcome after decades of stumbling in the dark. Furthermore, as a psychologist myself, I have always believed that more and better data leads to better treatment approaches and outcomes.

But as a mom, I’m not so sure. Dahlia is now 7. Looking back on her childhood so far, I don’t know if she or I would have been better served by knowing about her autism earlier. Of course, there may have been interventions I could have made while her brain was still so plastic in the first three years of her life. Certain targeted methods of playing — creating new neural pathways — might have enhanced her ability to relate and connect. Some of the most innovative autism research focuses on the benefits of these very early interventions. And for kids whose needs are far greater — those who are more deeply impaired by their autism — interventions can alleviate real suffering. Still, I wonder what would have happened had I known about Dahlia earlier.

If I had known, would I have ever discovered how much she likes having her arm rubbed when, desperate for her to make eye contact with me, I took to massaging it? Now, one of our favorite nightly rituals is the “arm massage” we perform for each other while reading stories in bed. When she was content to play in the dirt by herself at the age of 3, would I have insisted instead that she try to make friends, worried that by leaving her there I was “reinforcing” her autism? Would that have gotten in the way of noticing the gorgeous patterns she created, the way she could lose herself for hours in their simple symmetries? If I had known, would I have despaired at the way she squirmed in my arms, thereby reinforcing for both of us the sense that there was something wrong with her, instead of coming around to see it as just another Dahlia-ism, a quirk in my wonderful quirky daughter?

https://www.nbcnews.com/think/opinion/new-autism-diagnostic-aid-leaves-conflicted-scientist-mom-rcna64682

As the mother of a person on the spectrum, I'm cautious. It almost feels junk science-y to me.

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