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Being Autistic and Living in a State of Uncertainty

May 14, 2020 By Jodi Murphy Leave a Comment

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Megan Amodeo in face mask on Autism and uncertainty

By Megan Amodeo

It’s currently April 2020. My entire family, and most of the United States have been in quarantine for about a month. A relentless virus has forced most of us to lock our doors and stay put until further notice. Schools are closed. Restaurants and movie theaters are dark. The streets of heavily populated urban areas are desolate.

The Coronavirus, Covid-19, has descended upon our worldand cloaked us all in fear and misery.

People are dying. Loved ones have to go to hospitals alone. No one is safe or immune from this monster. People are being forced to work from home. Some have lost their jobs entirely. We are living in a world that is perched on the edge of a steep cliff. No one can ignore what is happening to the world we live in.

As an autistic person, my mind is in constant overdrive.

I think about everything for far too long and far too often. People have often wondered why the minds of autistic individuals work, think and act differently than our neurotypical counterparts. I cannot speak for everyone on the spectrum, but I know that I spend plenty of time in my own head. I also know that my daughters think the same way.

As you can imagine, I have been spending a lot of time in what I like to call my “mind palace.” I have been thinking about the state of the world. I’ve been wondering what will happen when all of this is over. When will all of this be over? In the meantime, I am holed up in my home with my husband, three daughters, my cat and two dogs. Did I mention all of daughters are teenagers?

Don’t get me wrong, I love my family. My family is my heart.

This being said, I am not used to having to be social all day. My family knows I am autistic, and they are cool with my autism. I mean more than half the family is autistic. In short, my house is overflowing with autism. So yeah, we get autism in this house. Still, I am usually alone for at least eight hours during most weekdays.

I love my alone time. I can watch anything on television, I can take a nap and I can sit quietly and stare out the window. With everyone at home, I am finding it much harder to find anywhere I can be alone.

With three autistics in the same house, it is like walking a tightrope. Due to the high stress and anxiety level, any one of us is prone to a meltdown at any given moment. I am not an exception in this scenario. In fact, I already had a meltdown over freezer-burned fries. We are also dealing with the lack of appropriate services for my three daughters because all schools are closed. My youngest daughter has an IEP. So far, we have been able to meet her needs at home. What she needs most of all, is the structure and routine that school provides.

Although they still technically have online schooling, it is not the same. Actually, nothing is the same. We are all out of sorts. Depending on what state you live in, we could be on home quarantine for some time. So, for now, this is our reality. Millions of autistics are living in a state of uncertainty.

There is a bright light at the end of the tunnel.

We will eventually push through this pandemic and come out on the other side. In the meantime, take it easy on the people with autism in your tribe, family and community. We function best when we have a schedule or routine. The world is not following a routine right now.

There are things you can do at home to help reduce the anxiety that often goes hand in hand with autism. For instance, try to stay on the same schedule as you would for school. I know it’s tempting to sleep in, but sticking to a schedule helps maintain sameness and a routine similar to traditional school. Try masking a schedule for each weekday. It doesn’t have to be elaborate. Stay in touch with your child’s teacher. Make sure you leave time in your day for sensory and stimming breaks.

Remember that everyone is trying to find a new normal. Sometimes you just need to sit alone, in a quiet room and eat chocolate.

Megan Amodeo
Columnist
Megan Amodeo
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Filed Under: Autism Insider, Blog Haps, Penfriend Project Autism Columns Tagged With: autism insider, Megan Amodeo

About Jodi Murphy

Jodi Murphy is the founder of Geek Club Books, a registered nonprofit committed to creating a world where autistic individuals are fully accepted, valued and have a voice. Her priority is bringing autistic individuals creative and leadership opportunities that are meaningful, empowering and support their advocacy. She works with a creative autistic team to produce pop culture-based autism awareness education that is innovative, engaging, positive and opens hearts and minds to a new way of thinking about autism. Sign up for Geek Club Books mailing list for free apps, resource guides, curriculum, audio stories and more: https://geekclubbooks.com/autism-bundle.

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