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An Autism Diagnosis Doesn't Change Who Your Child Is

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I wrangled the fine line of how much to share of our youngest daughter’s story, which unexpectedly has become part of our family’s story. Frankly, having a child with a disability in the family impacts the entire family. Something you don’t really realize until you actually experience it.

We found out at 14 months our daughter had cerebral palsy — spastic hemiplegia, to be exact. Actually, we found out earlier than that, we just needed our doctor to officially confirm with MRI results.

Later, we found out another part of our daughter’s story is that she also has ASD (autism spectrum disorder). News we already knew even before an official diagnosis. I think she was 2.5 or 3 when I hesitantly asked my husband, “Do you think she has autism?” And he quietly replied, “yes.” And that’s when it really became apparent that it was more than CP.

But, I have realized along the way — these diagnoses do not define her, but they are part of who she is. And I don’t know why there is a stigma that comes with autism, among so many things like miscarriages and mental health. I never want her to feel shame for any part of who she is.

I read over the evaluation results — pages and pages — and all the “red flags” they described made me quietly chuckle. They were describing some of the very things I found endearing about our sweet girl.

I’m not saying it’s not hard — some days I feel we are a family in crisis — we are all trying to figure it out together… how to be in each others’ worlds. Being a family with a child with disabilities can feel isolating, stagnant, and like no one really understands. But I see amazing good things happening too. My older girls are learning patience, grace, empathy, compassion, and understanding. They are finding the joys that come with being inclusive. We are simply becoming better humans.

I have come to experience a different level of pride that comes with raising a neurodivergent child — pride in seeing your child tackle and accomplish everyday things that we all take for granted. Pride so big it will make your heart swell and burst, and make you randomly cry while driving just thinking how far they have come.

For families with children with disabilities who may not feel understood, we stand with you. We understand the complexities that come with going to run a simple errand or out on a family outing. Having to think ahead of the “what if’s” and whether or not your child will experience sensory overload or a frustration meltdown. We understand the mental toll and how exhausting the end of the day can feel.

A diagnosis doesn’t change who they are — it just provides more answers and resources. And honestly, these last couple of years have redefined what it is to be “normal.” What even is “normal?” It doesn’t exist to me anymore.

Our daughter is an extraordinary child. She has the sweetest smile and I have seen her amazing giggle bring a smile to the grumpiest of people. She is incredibly smart. She is obsessed with lawnmowers, fans, leaf blowers, and vacuums, and I freaking love that about her. She will tell you the same knock-knock joke over and over — each time with the same tenacious effort as if she were telling it for the first time. I am not sure why God thought us worthy of being her parents, but I am absolutely glad He did.

Getty image by Liderina.

Originally published: May 16, 2022
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