Every Day Autism

or: Autism Every Day


In the process of finding myself as I age, I have been able to make many adjustments to my life that make things more comfortable. Everybody must do this, arrange our homes, our schedules, our routines, etc to make things work for us.
I am often able to simply go through life without a lot of struggles because I have made accommodations for myself.

Over the past few days, we went to visit a family member in a place unknown to me. We joined other family members who were there as well. A joyous reunion!
We stayed several days and then drove home again. Not something that happens very often in my life.

Being newly diagnosed and still becoming aware of my own autism and its struggles and strengths, I thought about my newly discovered diagnosis related to this novel experience, and had a series of “aha” moments.

In my recent experiences I was reminded about how much of my life is affected by my autism and I am gaining more perspective on my own struggles and how it affects others as well.

We drove about 7 hours one way to get there. We stopped twice. We had our dog with us .

I definitely needed my sun glasses to help control the flashing light and glare of light and shadow. In many places sun through the trees made powerful strobe effects. I understand why I get car sick/motion sick… my visual and audio processing can not keep up! I was mildly nauseated to almost completely sick – fluctuating at various times. I felt definitely disoriented, and anxious through out the trip. These things have been true whenever I traveled in the past. Now I know why!
( autisim and associated neurological processing struggles)

I was anxious about getting lost, anxious about the high speeds my husband drives at, anxious about his driving (miles and miles of accident free driving in his history) hypervigilant and fearful all the way there (and back). The dog did not travel well, and this added to my anxiety and concern.

Wearing masks and trying to avoid people, cleaning hands and etc at rest stops (we brought our own food in the car to avoid extra contact with strangers, etc) , also added another unfamiliar and very uncomfortable dimension to trip taking.

When we got there, our other family members were there, and we had a happy reunion, hugs exchanged, and days of talking and eating ensued. I found I could not follow or understand most of the information being exchanged. Everybody talking excitedly at once left me covering my ears, asking for clarity, needing explanations or lots of repeated statements, etc.
After several days of working hard to follow, understand, communicate, reach out and interact, I have wiped out my “coping tools” and need time to re charge and process all that input. I suspect I missed about 90 percent of information exchanged. The love and joy of our being together at last overshadowed this and compensated for a lot of the things I know I missed.

I woke hours before everybody else. In my everyday routine, I rise around 4 Am, I go online for a few hours, prepare my coffee and make breakfast, go back online to catch up on my autisim forum groups, do research, visit pages I use very day. No computer here, mine is a desktop and not portable. I read the only book I had brought with me the first morning I was awake.
I had not planned on hours alone in a strange place without resources to help me through… no computer, it was freezing cold in the unaccustomed air conditioning ( welcome during 90 degree day times but frigid at night and early mornings.
I slept very little and felt lost a lot. I had no resources to self accommodate. I had not even brought a sweatshirt or warm clothing.
I was invited to go on a couple of excursions in the big city nearby, but I became anxious at the thought of it, it had not been planned, I was not driving, I did not know the city or anything about it. Too big, too scary, too unknown. If I had a few days to prepare and to study maps, write instructions, print or draw a map or two…. I might have done OK… as it was, everything was unknown and unexpected. I don’t often do things without previous plans and insights, “impropomptu” is not part of my usual life practices.

I go to bed when it gets dark. The others stayed up till the approach of dawn and slept 4 to 5 hours later than I did.

We ate together, we talked, laughed, remembered, shared love, memories, insights, and enjoyed each other’s company. We will all no doubt need lots of extra time to rest and recoup, adjust and return to normal. ( all of us have neurological struggles of all sorts)
I have once again become aware of my autism and how much it takes to step outside the safety net of routine and familiarity, isolation and structure, and of the exhausting effect of the attempts to keep up with rapid changes, attempts to understand new and different surroundings, and to understand and communicate within groups of people, even very beloved people in social interactions , situations, locations, routines and new experiences, solo or shared.

Now two days home and lots of hours of sleep, normal life resumed at our usual quiet pace, I am beginning to recover my emotional, intellectual, and physical equilibrium.

I suspect it is going to be even more difficult as I become older. I need to think a bit more about how to make the adjustments I will be needing. I am so grateful for the opportunity to see those I love and care about most deeply, also for my new and deeper understanding of my own strengths and weaknesses in the new context of my autism and the ways I must do things to be at my best.

I had not stopped to consider “every day” autism, the challenges I deal with every day when those challenges are suddenly transported to new situations, environments, experiences, etc.

I sometimes think I am doing very well.

Experiences like this, positive though it was, remind me of the limits to my established ways of coping.

How much more difficult for those brothers and sisters in autism who have so many challenges I don’t have??

How much more difficult for those who don’t have choices to participate or to travel, or to be thrust repeatedly into new and bewildering or frightening situations?

The thing that is different now is knowing I do experience “every day” challenges that others simply don’t have. Diagnosis is life changing.