Anxiety, here, there and everywhere…

I have a friend who has a lot of experience with autism. She has raised a son with autism and taught elementary aged children with it for many years. She says the one predominant symptom that every single person with autism deals with (regardless of  severity) is anxiety.  Ido Kedar, author of Ido in Autismland says that he met a neurologist who said she thinks autism is a severe form of anxiety disorder which inhibits the ability to respond. I don’t think I would go that far because there is a definite motor impairment that affects James’ ability to respond but I now believe that I have underestimated how much anxiety stalks him and how hard he works to live with it.

I have several recent examples of this struggle. One was last week when we were planning on going to a museum and an IMAX movie.  Typically this is something James would enjoy but he was acting restless and whiny and I could not figure out why. I asked him what was going on and he said he felt anxious about our plans.  I said what part of the plan is getting to you?  He said “all parts of it”.  The thing that is sad is that everything we were planning was very familiar and it was just his Dad and me going with him.  But anxiety is part and parcel with having autism. I think its important to remember and to try and address it with therapy and other strategies.

James wrote about the anxiety he experienced during the dress rehearsal for the end of year school pageant in June.  I actually didn’t see the essay until recently but it struck me as a pretty awful way to feel. It was very sobering to hear what he experienced at the rehearsal. Fortunately after the stress of the dress rehearsal James enjoyed the actual event and it was a watershed evening for him. Here is his essay:

My First Talent Show
I spent the morning worrying and even cried. The tears ran down my cheeks, the screams escaping my mouth, and my hands acting on their own agenda.
This might lead you to believe that the evening ended in disaster, but let me tell you the whole story.
Anxiety plagues my existence. The dark cloud of fear extinguishes all hope. The world judges my every move. I am on display, a mannequin in a window, while rioters fight to break the thin glass. Knock, tap, thunk, smash. The glass shards assault my thin skin, blood trickles down, my emotions raw. Then I actually walk into the rehearsal.
Shannon shepherds me to a chair. I must focus on moving forward. Hands down, calm voice, quieting the voices from the smog. I see Shannon’s smile clearly, the love repels the darkness. Then figures emerge blurred by the doomed fog. Their fog weighs on my body like being immersed in pudding. Then I see a face, hear  a voice, and feel lighter; rays of sun filtering through storm clouds. A friend with strong character. 
The morning drags on. Stress, nerves, and frustration fill the air, drowning me. I vaguely remember walking on stage, but I remember the lights. They burned holes in my eyes, searing pain exploded in my brain, every  sensation overwhelming  my frail system. Then they disappear. Only dark spots remain. 
Later, I remember wanting to stay, but having lost all connection to the room full of people.  All I sensed was fear, stress, and depression, suspended in the thick air. Shannon and Lydia got me to the car and I felt relief flood over me. I was safe. They were safe from me. 
That evening when I walked into the room I felt pride, happiness, and lighter nervousness. I could breathe. The steady flow of kindness held back the creeping nerves and fed the calm trying to grow inside me.
It was glorious. I learned that the anxiety underestimated me. It feared the unknown, but I know who I am: James.
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9 thoughts on “Anxiety, here, there and everywhere…

  1. James, this post is written so well and communicates your anxiety so creatively. I’m sad that it was so hard for you (I’m assuming this was the end of the year pageant last June) and hope that you know that ALL the kids were nervous about their respective parts — you were not alone. Above all though, I’m so glad you felt like the actual evening performance went well (I thought it was spectacular and that you did a wonderful job!). I love that coming through it you saw better who you were as that curtain of anxiety was pulled away! You have grown so much (and I’ve only known you for a year!)!

  2. It’s brave of you to share your inner feelings James, I think anxiety is a common feeling for all of us especially when having to perform in front of others! I think people forget the added physical anxiety autism adds, thanks for your words reminding us to be more patient and accepting :).

  3. Thank you so much for sharing this. Your writing is exquisite and your descriptions really take us into the experience autistic people face with anxiety. My daughter also thinks anxiety is her #1 problem and I am so grateful with RPM that she can now tell me that. I would really have had no idea as she seems so calm on the outside. Thank you for speaking out and letting others know what you and she are going through.

  4. This took James many days to type, mainly because the emotions would creep back up, even weeks after the event. He would become overwhelmed again by the memory. This is something we also often overlook.

  5. Nervousness, if not debilitating, gives a performer an edge. One of the comedic greats, Red Skelton, had terrible stage fright right before walking in stage; his panic was so severe that he vomited offstage every time before beginning a live performance. Then he took the stage and wowed the audience.

    James, remember this: the audience is on the performer’s side.

  6. Brooke, I would encourage you to seek out a clinician specializing in neurofeedback. I believe you can also find the apps and device for this from http://www.neurosky.com . It can help James learn ways to calm his own anxiety by controlling the neural connections in his own brain. It is not hard to do and can even help people halt the transmission signals sending pain to the brain! God gives us the ability. All we have to do is learn how to use it. You can read the research about it here: https://www.researchgate.net/profile/Thomas_Myers/publication/38035502_Neurofeedback_for_Autistic_Spectrum_Disorder_A_Review_of_the_Literature/links/09e415058b3ebc247e000000.pdf

    It has helped my older teen who expressed anxiety similar to James. We used the MindFlex but they now have apps for the iPad that are designed for this. It would be interesting to see if James finds relief from his anxiety using this.

    Best wishes!

    • Hi! Thanks so much for taking the time to tell me about your family and your journey with autism and Faith. I also appreciate the information about neurofeedback. We have done some for James but not in a long time so I am not up to speed on the latest protocols and devices. I will look into it.
      All the best, Brooke

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