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I think my child might be Autistic but the pediatrician says "not to worry." What should I do?

by Rabbi Shoshana Meira Friedman

As parents we look to our pediatricians to be experts in child development. But actually, most general pediatricians are not well trained in the diversity of Autistic presentations in children, and only recognize a few narrow stereotypical presentations. Traits pediatricians tend to recognize include: avoiding eye contact, delayed speech, and obvious lack of typical social engagement. Black and brown Autistic children get missed for diagnosis at high rates regardless of how they present.

But saying a person can’t be Autistic because they make eye contact or have friends is like saying a man can’t be gay because he doesn’t like musical theater.

Many Autistics (my son and I included) do not match the stereotypes. Autistic brains share key underlying characteristics, but Autistic people are an extremely diverse group. (Even Autistic children who do match some stereotypes may mask these traits in a doctor's office. )

In addition, many pediatricians still think of Autism as something bad, instead of as neutral and important information to have about a person. These pediatricians may not know about the neurodiversity movement or the Autistic communities available to families now.

So when pediatricians see non-stereotypically presenting children, they often tell parents: “You don’t have to worry about Autism.”

But as a late-diagnosed Autistic person I can assure you that while being Autistic is challenging, and there can be plenty of things to worry about, the biggest worry is not identifying a child (or adult) as Autistic when they are.

So, if your pediatrician says: “Your child is socially engaged and makes good eye contact. You don’t need to worry about Autism,” Here’s what you might say back....

“You know, I’m not worried. I’m curious. My child has many Autistic traits, and I want to know more about how their brain operates so I can give them good support, community, and identity. Autism can look many different ways, not just the stereotypes. So, I’d like a referral to an assessment please."

If your child presents with neurotypical social traits, or masks their Autistic traits outside the home, or is born female, or is not white, you may still have trouble getting an accurate assessment.

It's important to note that while a clinical diagnosis is required for some supports and insurance coverage, you do not need to wait for an Autism diagnosis before beginning neurodivergent-affirming accommodations at home, advocating for your child in school, or giving them language for their differences and challenges.

In addition, in the US where I live, you can request a school-based evaluation for an Individual Education Plan (IEP) regardless of whether your child has a clinical diagnosis. Some children even receive "educational diagnoses" of Autism before they receive a clinical one. Some children only ever receive one of the two. In the US, a child with an educational diagnosis of Autism will be eligible for public school services even if they do not have clinical diagnosis.

As with any interventions for a neurodivergent child, do your research before taking the recommendations of the school or doctor. Listen to Autistic voices online, listen to your child, and listen to your intuition about what interventions will actually serve your child's short and long term wellbeing.

In the US, you have a legal right to a request an IEP evaluation for your child, even if the school doesn't see any "problems." Contact the Special Education coordinator at your child's school, or at the public school district. If your child is in private school or homeschooled, you still have this right from the age of 3 and up. Contact the public school district.



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