Wednesday, November 23, 2016

What one mom wants to tell you when you ask if her daughter has autism.

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This story was originally published on The Mighty.

I’ve seen the looks. I’ve heard the whispers. Nobody actually says it to my face, but I see them wonder. “Are you sure she has autism?”

People have a narrow view of autism. They seem to think they would be able to spot a child with autism a mile away. They envision a nonverbal child lining up his cars. They envision a child who can recite statistics about Mars.

But that isn’t the reality of my child. That isn’t the experience in my house.

My child will greet you. She will say hello and make eye contact. She can be quite social and has no trouble answering your question of, “How are you today?” with a response of “fine.”

But she may not be feeling “fine.” It takes effort to muster up that response. She would likely much rather be in her room with her headphones on and her heavy blankets.

When you are asking her how she is, her brain may be latching on to sounds, and it can take effort to quiet them in her head. The feeling of the seam on her sock may start to send an overwhelming sensation pulsing up her body, causing her skin to itch and tingle. The lights in the room may seem too bright, making her head pound. But while all of that is going on in her body, she manages to look you in the eye and muster the words “I’m fine.”

So how does she do it?

Autism in girls like my daughter can look quite different.

She has distinct instincts, so she learns to model and copy, but children with autism can have difficulty transferring information from one situation to another. She learns her friend Jane thinks it’s funny when she says a certain phrase, and she may expect everyone to think it’s funny. So when Suzy starts to get upset by the same thing, the world becomes a confusing place.

The strain and stress of holding it together can become a huge weight to bear. It can become too much to contain. It needs a release. It needs an outlet. This can be where aggressive, demanding, or oppositional behaviors come out — or at least that’s how it appears to the outside eye. The reality is that underneath is likely confusion and isolation and anxiety.

Autism is a spectrum. It is not a one-size-fits-all diagnosis.

While the spectrum includes some general traits, those traits do not present themselves the same way in all individuals. So people will wonder and whisper and question our diagnosis.

I won’t carry around my assessment papers to prove to the skeptics my daughter has autism. I shouldn’t have to.

There should be less judging and more acceptance. There should be less questioning.

So please don’t question if my daughter really has autism. Trust that she does. Trust that she is working hard to find her place in a world that can often be difficult to understand.

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This story was originally published on The Mighty and is republished here with permission. The Mighty is a platform for people facing health challenges to share their stories and connect. Enter your email here, and they’ll put you on their weekly newsletter list.

If you liked this story, you might also want to check out: "Comic Redesigns the Autism Spectrum to Crush Stereotypes."



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