Both Sides Now

“In the meantime, it is probably helpful for you to know that (DDR) is on the autism scale but is a very high-functioning, happy and incredible child.”

This is a sentence DDR’s advisor wrote at the beginning of the school year to all her teachers as part of a larger email about the supports that she was going to need.

Advisors at DDR’s school are assigned to every child typical or no and act as that child’s advocate. I really like DDR’s advisor and think she is a good fit for my daughter. So far, DDR has nothing but great things to say about her daily interactions with her advisor, so I gather that she feels the same way.

So, when someone I think understands my spectrum child and uses the word ‘but’ when describing her as autistic BUT incredible – it makes me all feel kinds of negative feelings. Angry, sad, frustrated, helpless. ‘But’ used in this context implies that we expect less from someone before we know anything about them other than their diagnosis.  Kind of like “you would think given her diagnosis she is inaccessible and broken, but she’s actually quite incredible!”

It’s emails like these that make me question who we inform about DDR’s diagnosis before they get to meet and know her. We are not afraid of her diagnosis – that would be like being scared that my son has texture issues when it comes to food. There are much more worrisome challenges in parenting. I am wary though of the impressions that someone might have before meeting DDR because she has been diagnosed and the work she would have to do to overcome those impressions. Work that her typical peers might not have to get the benefit of the doubt.

I haven’t solved that problem yet. And it comes up more and more as DDR gets older. When she was really little, I shouted to anyone who might be listening that my kid was an Aspie. I was very concerned with them realizing that spectrum looks different on all people. As she ages, I am beginning to wonder where and when I bring it up – or if I just allow her to do it.

I’ve discovered, I can’t do much to change people’s minds unless they specifically ask me to help them change. I’m left with helping my daughter shape her own opinion of herself given the experiences she has with others.

I pray every day I am doing right by her.

I’ve solved nothing with these thoughts that go round and round in my head. I currently have to take every day one day at a time because I didn’t really learn from the day before exactly what I should do in regards to navigating the world with my ‘happy and incredible’ daughter.

But I will say one thing I should not do: putting happy and incredible in quotes like I did above when I speak about my daughter. Like it’s something separate from the rest of her narrative. The same as the symptoms of her diagnosis, happy and incredible is just something she is.

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