Tag Archives: autistic aging

Autistic Burnout and Aging

Last September I returned from a vacation that I had been dreaming of taking for several years. I had booked my vacation quite a long time ago. After booking it, my personal resources declined. Many autistics know this phenomenon as autistic burnout. I am beginning to understand that there is likely some interplay between autistic burnout and the aging process.

In autistic burnout we come to the end of our resources that enable us to act as if we are not autistic in order to meet the demands of the world around us. For me these demands have included things like being able to raise my children and maintain employment. I have gone through a few distinct periods of burnout and have successfully managed them by withdrawing from the world as best I could while carrying on daily commitments to children and to employment. Twice during my adult life I had to severely limit my gainful employment because the burnout was too great to enable me to continue. I always have been good at planning and saving so each of these times I had a saving account to draw from for several months.

Finally, I had accumulated enough savings to feel confident to book one of my dream vacation! For many years I have found good deals on Alaskan cruises to see Glacier Bay and at long last I felt in a place to be able to actually book the cruise. I have a particular love of water in natural settings. It was very exciting to plan and dream of this upcoming vacation.

Then, autistic burnout began to rear up again. I thought I knew just how to navigate the burnout. At least I knew to slow down, pull back from social engagements and increase sensory regulation time and modalities. In the past these things had been helpful and allowed me to get back in sync after a few months, thus being able to venture back out into the life I wanted. Not this time.

I am thinking the combination of autistic burnout along with aging has made this episode quite different than the other times burnout has been problematic. For almost a year now, I have been experiencing somewhat of a burnout, but the difference is that I am not able to get past it like I have previously.

Over the months I’ve ramped up my sensory regulation. I am now spending about four hours per day devoted to keeping myself regulated. Some of the things I do include swimming, walking, bike riding, massage, and absolute quiet. In the past all of these things worked well. Now all of these things just sort of work. It means that no matter how much I do I never feel completely regulated.

Then, my vacation time arrived and regulated or not it was time! And, I was excited – very excited. So, off I went – first to San Francisco for some days and then on the cruise. I was by myself most of the days in San Francisco. I did some sight seeing, but all in a way that worked well for me. I was not rushed and did not have anyone else with me. Most of my friends could not understand why I was looking forward to being completely alone on vacation in San Francisco, but it worked very well for me. I could come and go as I was able and stop whenever I felt the need.

I did have friends who met up to have a day in San Francisco before boarding the cruise. While on the cruise we went our separate ways during the day, sharing a dinner table for our evening meal. It was fun to compare notes on who did what during the day and it was just enough social demands for me to enjoy the company, but not be overwhelmed. I could go the entire day without speaking to anyone and walking around the deck viewing the waterways or watching different activities on the cruise ship.

Now that I am back home I have realized that this burnout is different. Even after a lovely undemanding time away my body regulation has pretty much stayed the same – it has not improved as I had anticipated. Now I am thinking this present autistic burnout is combined with effects of getting older. It is like my body has hit a new normal of sorts, meaning that it has slowed down. It seems that no matter how much sensory regulation I do in a day that my body will never get back to what I consider ground zero. Perhaps this part is some of the aging of my body – it just doesn’t spring back to where I can be all chipper and ready to roll full steam ahead.

While at sea I thought a lot about this. In fact, I left my ideas and expectations of my younger self somewhere between Juneau and Skagway. By the time I arrived in Victoria I was trying on my newly found freedom of being okay with the slowed down self of me. The walking tour along the seaside was going too fast for me to be able to take the photos I wished to take. When the tour veered away from the seaside trail I excused myself so that I could be alone. I took my jolly good time walking back to the ship and taking over 300 photos during a leisurely stroll, I enjoyed it immensely!

Now that I am home I am continuing to practice being kind to myself by adjusting my own expectations of how much I do in one day. As an autistic I have for several years been doing the same quantity of employment, housework, art production, regulation, reading, writing, etc. both daily and weekly. Following a schedule is important to me as is getting things accomplished. I didn’t realize my self imposed expectations needed to be adjusted.

Spending ten days on a ship surrounded by natural waterways helped me to understand that autistic burnout may be impacted by the natural aging process, meaning that I will not come out of an episode of burnout at my younger starting point. Because so little is known about autistic people and aging, those of us who are getting older can at least start a discussion about it. I personally am wondering just now if the years of acting – passing as a neuro-majority person – impacts the natural aging process. Do autistics age faster because so much personal physical resources are impinged upon in order to year after year appear to be as typical as possible so that we might fit in enough to pass as somewhat human to the rest of society? And if so, is this a fair price to pay? And fair for whom?

IMG_6746

BOOKS AND DVD BY JUDY ENDOW

Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic Adult. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2006). Making Lemonade: Hints for Autism’s Helpers. Cambridge, WI: CBR Press.

Endow, J. (2013). Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.

Endow, J. (2009). Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009). The Power of Words: How we think about people with autism spectrum disorders matters! Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009c). Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals With Autism Spectrum Disorders. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2010). Practical Solutions for Stabilizing Students With Classic Autism to Be Ready to Learn: Getting to Go. Shawnee Mission, KS: AAPC Publishing.

Myles, B. S., Endow, J., & Mayfield, M. (2013). The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment. Shawnee Mission, KS: AAPC Publishing.

Originally written for and published by Ollibean in October 2016. Click here to comment.

Autism and Movement Fluidity in Thinking

One of the hardest things about my autism is the unreliable fluidity of my own thinking. Sometimes my thoughts are fluid and sometimes they are not. When my thoughts are fluid I can easily think through task-oriented things such as making a meal, writing an article, or cleaning the house. I can make a mental (or written) list and follow it. I can think of a main idea and sub topics. I can gather supplies and start.

When my thoughts are not fluid life is a bit different. When it comes to meals, rather than eating dinner, I will eat one thing at a time. I might eat a banana. Then an hour later I might put a frozen turkey burger in the microwave and eat that. Later still I might put a bag of frozen vegetables in the microwave and eat just those vegetables. It works for me. When it comes to writing or cleaning the house I am not able to engage when my thoughts are not fluid. Well, technically, I could engage, but have learned that it is a huge waste of time. My best strategy is to put it off until my thoughts are more fluid.

Because it does not work in life to simply put off doing many things because my thoughts are not fluid I have figured out strategies to keep my thinking as fluid as possible. Many of these strategies are sensory related. The more disregulated my body becomes the less fluid my thoughts is the general rule. Even so, it is not consistent across the board. There have been occasions where I was quite disregulated and had fluid thoughts. There have also been occasions when I have been well regulated and my thinking fluidity was anything but fluid!

Helpful Activities Toward Impacting Movement Fluidity in My Thinking

  • Maintaining General Over All Sensory Regulation: I spend several hours every day to maintain regulation as best I can. Typically I have a current routine that works well for a couple of years and then what works for me to bring daily sensory regulation to my system changes.
  • Walking: Many times walking seems to serve as an oil of sorts for my thoughts – i.e., walking helps my thoughts to move along as my feet take steps.
  • Writing: Sometimes I can kick my thinking into movement if I begin to write words. This strategy is especially helpful when my brain is stuck on a phrase that keeps repeating in my thoughts. I find that if I write down a repeating phrase each time it comes up that after a few times I can continue on with the written phrase. Sometimes I continue on in writing and other times the thought fluidity is sparked enough that I can continue on with my thinking without the need for written support to aid the thinking fluidity.
  • Art Endeavors: Creating anything artful that shows movement such as painting, quilling, quilting, knitting, crocheting, photography, etc. is quite helpful to get sluggish, non-fluid thoughts moving better. The practical problem with this strategy is that even though I have many sorts of art endeavors I enjoy, they are packed away on shelves inside a large walk in closet. When my thoughts are not fluid I do not have the capability to get out the supplies I need for any given project. I have tried over the years to outsmart this by having a great organization system with totes/boxes clearly labeled. While this has made for a neat storage closet it hasn’t been helpful in terms of being able to get out needed supplies to engage in an art project when my thoughts are not fluid, i.e. when I need it most is when I can’t do it.
  • Reading: This strategy doesn’t consistently work, but it is so easy to pick up a book to see if reading will work. I can know after reading a few pages whether or not it will work. I always have several books I am in the process of reading so have lots to choose from at my fingertips when I am home! I have also found that if I read every day it seems to be helpful in terms of keeping my thoughts more fluid.

Additional Information

The problems I experience with fluidity in thinking seems to be a movement related issue. It has so many parallels to physical movement only instead of my body moving, the movement has to do with the physical movement in my brain that happens when thinking. The impact of movement fluidity in thinking used to be a small factor in my life. It seemed that as long as my body was in a good place with sensory regulation my thinking fluidity was pretty good. This has changed with age, especially over the past few years.

Additionally, the problems I experience with fluidity in thinking are not the same as experienced by older adults in general. When movement fluidity in thinking becomes glitchy – jumping, stopping, slowing with irregularity in pace and intensity – I can impact it towards good by employing the previously stated measures. If I do not actively use these strategies my thoughts become fewer and fewer along with body movement becoming less and less. This gets scary so now that I have figured out what to do I do so.

Poverty of Information Currently Available

During the past few years (I am 61 as I write this blog) my thinking fluidity has become more front and center in needing to be managed. The ideas stated here have been the ones that have worked the best for me. There is so little written about autism and aging. There are so many autistics aging. It seems I am foraging into new territory to write about this topic.

I also wonder about the impact of autistic burnout factor that many of my aging autistic cohorts have written and discussed. This burnout has to do with becoming physically unable to keep up the pace of acting as if we are not autistic so as to fit into the world around us. After decades of making ourselves appear to be of typical neurology so that we can work to pay the bills and interact in community settings to raise our kids many of us slowly come to experience burnout. Some of us have come to a grinding halt and others of us experience this burnout more slowly over time, but all of us have found it necessary to pull back, retreating from the demands of our world. I wonder if there is an intersection or overlap of autistic burn out and difficulty maintaining thinking fluidity or perhaps if uneven movement fluidity in thinking is part of autistic burnout.

Looking to the Future

I would love to hear from others as to the presence/absence of increasing difficulty with thinking fluidity as aging occurs along with any helpful ideas you are willing to share from your own experience. In addition, if anyone knows of anything written about this topic of movement fluidity in thinking being impacted as autistics age please share. I haven’t yet been able to find any resources about this topic. Looking forward to hearing from my comrades – feeling the need to age gracefully together, learning from one another and forging new territory for those coming up behind us.

14064124_10153901901763177_1130346225943057899_n

BOOKS AND DVD BY JUDY ENDOW

Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic Adult. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2006). Making Lemonade: Hints for Autism’s Helpers. Cambridge, WI: CBR Press.

Endow, J. (2013). Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.

Endow, J. (2009). Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009). The Power of Words: How we think about people with autism spectrum disorders matters! Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2009c). Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals With Autism Spectrum Disorders. Shawnee Mission, KS: AAPC Publishing.

Endow, J. (2010). Practical Solutions for Stabilizing Students With Classic Autism to Be Ready to Learn: Getting to Go. Shawnee Mission, KS: AAPC Publishing.

Myles, B. S., Endow, J., & Mayfield, M. (2013). The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment. Shawnee Mission, KS: AAPC Publishing.