‘I’m Sorry, She Has Autism’

Meagan Cheney avatar

by Meagan Cheney |

Share this article:

Share article via email
caregiver self-care | Dravet Syndrome News | Main graphic for column titled

Autism is a secondary diagnosis for my 6-year-old daughter, Austen.

Her primary diagnosis is Dravet syndrome, which causes her to have intractable epilepsy, weak muscle tone, and many other symptoms. I’m not sure if her autism is a stand-alone diagnosis, and if she would have it whether or not she had Dravet.

Over the last two years, we have thankfully gotten Austen’s seizures, especially the big ones, pretty well under control. Thanks to a new medication called Fintepla (fenfluramine), which was approved by the U.S. Food and Drug Administration in June 2020, she has only had four seizures since last August.

As her mother, I rejoice every time we hit a new seizure-free milestone. But it is a double-edged sword. The longer the breaks her brain gets between seizures, the worse her autism behaviors seem to become.

As a girl, Austen’s autism doesn’t present in a way that many people think of as “typical.” She is very social and loves everyone, especially strangers. Instead of shying away from social situations, Austen is almost too social sometimes. She wants to hug everyone in her path and doesn’t understand that people have personal bubbles.

I’m realizing that the phrase “I’m sorry, she has autism” is becoming increasingly frequent in our daily interactions.

We say it to families at the park.

We say it to friends at get-togethers.

We even have to say it to the cashier at the home improvement store because she commented on how “touchy” Austen was when she ran ahead of me and hugged her before I could catch up.

My husband and I are trying hard to instill these social norms into her, but she’s just not catching on as quickly as another 6-year-old would. The truth is that she might never fully catch on.

So what do we do? We talk before we get out of the car everywhere we go. We talk about people’s bubbles and give reminders when we are out in public. We say “I’m sorry, she has autism” and try to educate people wherever we go. At the same time, we know people have bubbles. And a person having autism isn’t an excuse to continuously invade their personal space. Because of this, we sometimes find ourselves in the park or grocery store early because Austen and, by association, Mama get overwhelmed and just need a break.

Don’t get me wrong, I’ll take autism behaviors over big seizures any day. It is a lot of work, but what choice do we have? Austen was gifted to us for a reason. Not as a burden or an obstacle to overcome, but as a child to love and nurture. And we have been gifted patience and perseverance in return.

Plus, those hugs and kisses come in handy at home. There will probably never be a time when she doesn’t want to cuddle with Mama, and who can think of a better gift than that?

***

Note: Dravet Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Dravet Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Dravet syndrome.

Comments

Frosty Silverstein avatar

Frosty Silverstein

Very interesting story on Dravet Syndrome/autism. How fortunate Austin is to have such a loving, intelligent mother. Several yrs ago I lived in Santa Fe, NM. An artistic community known for its embrace of New Age lifestyles. People there seem to have more of a tendency to hug and touch while interacting. Coming from a Midwest city much more conservative and modest, my "bubble" resisted this behavior even though I knew people valued affection and that there was no inappropriate intent on their part. This must be quite a perplexing issue for you and your daughter, some folks will happily accept her hugs, others repulsed. I think it's wonderful you are teaching her to respect the space of others. She may have to learn the hard way, as she gets older, and rejected by some. Too many parents of perfectly normal kids just indulge their childern and that is so wrong. My heart goes out to you for the challenge you are faced with.

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.