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'He's exactly the way he's supposed to be'


This was one of the last photos my parents took before Luke (left) was diagnosed with HLH.

Carrie Cariello’s blog “I Know What Causes Autism” is a piece that has made a large impact on me since it was first published. The piece, which you can find here, does an excellent job describing autism from a mother’s point of view. There’s one part, though, that has always stood out a little more than the rest.


While Cariello opens the piece by talking about the various things that cause autism and, ultimately, what she thinks causes it, she creates a side plot about the autism “epidemic.” She creates a realistic push and pull scenario where yes, people want to know solutions, but that also contradicts the open-mindedness situation we as a society are trying to – and must – create.


I’m in a long-term relationship right now with someone I would ultimately like to spend the rest of my life with. Ryan is amazing with Luke and treats him for who he is. We were hypothetically talking about the possibility of children one night, and I told him that before I thought about kids, I wanted to get genetic testing done for HLH, or Hemophagocytic Lymphohistiocytosis.


This condition, which causes cells in the immune system to destroy not only infected cells, but healthy tissue and organs, was what my brother was diagnosed with and, ultimately, what my family believed played a part in his autism diagnosis. While I don’t have HLH, there’s a 50% chance I could be a carrier. However, in talking to my boyfriend, he asked me one question.


“How would being a carrier affect your decision?”

You know, I never thought about that. From everything my parents talked about during that time in Luke’s life, I would never wish that on anyone. My parents wanted four children before Luke’s diagnosis; now it’s just the two of us. It clearly affected their decision, but would it affect mine?


I still could not answer that. What I can say, though, is that regardless of whether my children are neurotypical or neurodivergent, that they will still be loved. Really, in today’s world, that’s what matters. As Cariello said in her blog, I want to know what causes autism, but I also know that regardless, acceptance and tolerance is more important than any diagnosis. Luke is exactly the way he’s supposed to be, just like my children will be.

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