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

[Jilly_in_VA]

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.

[intrepidity]

1. Pet peeve

When people post articles that are first-person narratives, but fail to use the

"excerpt"

or

"blockquote"

tags which visually indicate that an article is quoted, not the thoughts of the DU poster.

/rant

[ShazzieB]

7. You, that bugs me, too.

One of my DU pet peeves, fact. I wish I knew how to get this (and certain other things regarding post formatting, etc.) across to everyone who uses DU, but I've resigned myself to the fact that I can't.

I love humanity as a whole, but people drive me absolutely bonkers sometimes!

[Bluethroughu]

2. Having an adult child diagnosed with Autism at 9 years old,

I would have appreciated the biological early science a hair folical could provide against excuses or misdiagnoses that led her to be diagnosed at 9.

She was different and although she saw a regular pediatrician, she fell through the cracks because she met most benchmarks most of the time. I noticed it right away, but I knew her. They only saw her as shy, independent, or quiet. The repetitive behaviors that trapped her in frustrated tantrums daily were unseen in the doctor's office.

None of the therapies would have worked much different than they have. I read from many books, medical journals and both educational and personal blogs to help find my way through those first 9 years, but it was the accommodations in school that allowed her to make her way in confidence as a person with special features and not just needs. I wish she could have had that sooner, but she's doing well so no regrets. Only hope for early diagnosis and support for families and children going forward.

[Jilly_in_VA]

4. Mine wasn't diagnosed until 15

so what ya complaining about? Seriously, I had to basically come out and say, "Well, I think he's probably autistic. Do YOU?" Never mind he'd been to assorted doctors and psychologists and whatnot since he was 3 and bounced in and out of special ed classes and at that point was in a classroom environment where he patently did NOT belong. I could even point to specific medical instances that had made his condition demonstrably worse, but nobody listened. So I am not at all convinced of this "new method" being much more than junk science.

[SheltieLover]

3. Try filtered sound therapies & neurotherapy.

He former: Tomatis Therapy & The Listening Project, Dr. Steven Porges' Polyvagal Theory put to use.

For neurotherapy, perhaps the professional association can refer you to a qualified practitioner.

I've seen a combo of these 3 work miracles, with educators having said "This is like a different kid!"

Occup therapy places often offer tomatis.

Good luck!

[PoindexterOglethorpe]

5. My son, born in 1982, was not diagnosed until

he was 18 years old and half way through his senior year of high school. The diagnosis was Asperger's, which sadly no longer exists. It, Asperger's, is a very useful diagnosis.

My son was different from the day he was born, although it took years to figure that out. All of us parents, especially us moms, know that our children are uniquely different from each other. We accept that. We embrace that. We don't fret about those differences. Because most of the time they are relatively trivial. Except when it involves a child on the spectrum.

I always knew he was different. In the early years, I just accepted that as normal differences between children. Over time, it became clear that he was different far beyond the normal childhood differences. I recall having conversations with other mothers about our kids, and knowing that my son really and truly was not like theirs.

One thing that helped me and my son a lot was that I gave a lot of serious thought about home schooling. Which I actually think more parents should do. Even if home schooling is absolutely wrong for you, thinking seriously about it helps you to figure out what you actually want for your child. But I digress. I did semi home schooling things with my son. Those things helped me to see that he was different from his peers. I also enrolled him in lots of summer and after school programs, which helped. I recall one, a swimming program, where the instructor pointed out something he did that wasn't quite normal. At the time, neither of us thought it was anything other than odd/interesting, but looking back it was part of the whole Asperger's thing.

My son is now 40 years old, in a PhD program in astronomy at George Mason University in Fairfax, Va. He's happy, well adjusted, loves what he does. I do think that the man who brought him into that program understood quite clearly what my son was, but I've never met or spoken to him.

Here's a light-hearted ending. I have a cat who does not like being touched. My son, no surprise, likewise does not like being touched. I keep on telling my son I'll send the cat to him, and that they would get along quite well. In reality, I love my cat. She has gotten more affectionate over time, and my son would not at all want to have a cat to be responsible for.

[Jilly_in_VA]

6. A friend of ours

took her kid out of public school when he was 9 because she could see he was just the obvious "square peg" and the standard fourth grade curriculum wasn't fitting him at all. She homeschooled him from then on through high school in whatever ways worked for him. He's very bright and got his GED at 16, which was about the time I met him. I was struck by some similarities between him and my son and right away pegged him as someone high up on the spectrum. The year after he got his GED he didn't go straight to college. His mom very wisely worked with him on a few more subjects plus spent the year on what she called "adulting"--teaching him all the skills he would need to survive on his own. Smart mom! He's now in college and doing very well. Yay mom, yay Justin!