Tag Archives: autistic experience

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?

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BOOKS  BY JUDY ENDOW

Endow, J. (2019).  Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology. Lancaster, PA: 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).  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.

Autistic Neurology and Behavior

Autistic people use behavior just like people who are not autistic. Basically, when a problem is encountered, people behave in a way so as to fix the problem. We all do this, whether we are autistic or lack autism! However, we live in a majority-is-the-norm society. This means that the behavior most individuals employ to solve day-to-day problems is considered the norm. We call their behaviors solutions.

Just like everybody else, when autistics come up against a problem, we employ a solution to remedy that problem. Our behavior, even though it is a solution, it is called “a behavior” meaning it is bad behavior. This is how it often works out that those around us want to fix what they have defined as the “problem behavior.”

This is one reason I have never ending employment as an autism consultant to school districts. It is my job to sort this out for staff in a way that makes sense and helps them move beyond the difficulties they experience with autistic students. I find once teachers understand autism neurology they are able to join with their students finding viable alternatives that work in the classroom environment. Here is a familiar example I run into quite often:

Scenario as Reported by Teacher: “My student with autism simply refuses to do any school work. Every time I request he do some work he simply says, “no” and won’t do it. When I persist, encouraging him to try, he just gets up and runs out of the room. If I try to stop him from leaving he hits me, screams and throws things, often destroying the room. What should I do?”

Understand the Underlying Autism Neurology:

  1. Teacher: “My student with autism simply refuses to do any school work. Every time I request he do some work he simply says, “no” and won’t do it.”Underlying Autism Neurology: Often “no” or “I don’t know” is a default response when the autistic neurology experiences a surprise. A neurological surprise is anything unanticipated in the moment. An autistic neurology is a completely different operating system than a typical neurology. Therefore, when a teacher shows up at the side of the student’s desk with work, even though it would not be surprising to most students, it hits the autistic neurology as a surprise. This is a neurological event and as such, not a choice for the student. This isn’t a won’t (as in “I will not do what you ask”), but a can’t – the neurology cannot access anything but unexpected surprise mode. In this mode, most autistic students develop a canned response and often times we hear “no,” “I don’t know,” or some other such phrase. These phrases are solutions because they serve to make the unexpected surprise go away. It isn’t about refusing school work. It is about managing a neurological surprise as expediently as possible to prevent it from getting out of hand.
  2. Teacher: “When I persist, encouraging him to try, he just gets up and runs out of the room.”Underlying Autism Neurology: When the autistic neurology is presented with an unexpected surprise, saying “no” or some other phrase allows shut down so as to protect one self from this neurologic surprise. If shut down is challenged the neurology is forced further along into survival mode – meaning flight or fight. Reasoning is not involved. Flight or fight is an autonomic nervous system response. This particular student’s automatic survival response was flight so he left the room in response to perceived threat. It does not matter that the teacher presenting schoolwork was not an actual threat, but that the autistic neurology often automatically codes unexpected surprises as threats to the system.
  3. Teacher: “If I try to stop him from leaving he hits me, screams and throws things, often destroying the room.”Underlying Autism Neurology: This student’s autism neurology was hit with an unexpected surprise that forced him into shutdown. When shutdown was “challenged” the autonomic nervous system survival mode was further triggered into flight. When flight was prevented the autonomic nervous system engaged in the only remaining survival mechanism – fight. When engaged in this sort of response the autonomic nervous system triggers body physiology to be extremely strong and capable of putting on the fight of one’s life because survival depends upon it.

Solution Based on Autism Neurology: The solution for this school team was two-fold. First, until the presenting difficulty of doing schoolwork is remedied, this student will be given a way to leave the room when he needs to leave so that we do not trigger a survival fight. Because this student loves maps, a story about following the map when needing to leave the room was presented with the map embedded right in the story. I suggested pairing leaving the room practice with the story as many times as needed. After all, we want him to leave and go to the designated safe spot rather than triggering a survival fight.

Then, we needed to get the student on the road to doing schoolwork. The team had been quite stuck in trying to solve the stated problem of refusing to do work and, if pressed, leaving or trashing the room to avoid doing schoolwork. Now the team shifted from managing oppositional defiant behavior of refusal and avoidance to solving for autism neurology. It was so much easier to solve for unexpected surprise and unclear expectations as evidenced by the list of supports they brainstormed! (This list includes using interactive visual schedule, priming, use of visual timer, and using reinforcement.)

Conclusion: It makes sense that when you see behavior in others you assign meaning according to what it would mean were you engaged in that behavior. This strategy serves most teachers well as they share the same underlying neurology as most of their students. However, when working with autistic people remember the neurology imposes a different operating system. Strive to understand it. The more you understand the less often you will become stuck. Besides being kind and being the right thing to do, it is far more expedient to support autistic neurology than it is to assume negative character and ill intentions about your student with autism when he is struggling.

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BOOKS  BY JUDY ENDOW

Endow, J. (2019).  Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology. Lancaster, PA: 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).  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 on November 30, 2016.
Click here to comment.

Autism, Hidden Curriculum and Making Friends

It can be difficult for some autistic people to sort out what things are okay to say and what things are not okay to say in various social situations. This was true for a high school student I worked with during the past year. William very much enjoyed talking with others, but was asking questions and making comments that were not appreciated by teaching staff. Worse, these comments and questions were causing other students to avoid him rather than include him in social exchanges. Each time teaching staff explained to William that his comment had been offensive and had caused other students to move away from him William would feel bad, say he would not make that comment again and could even come up with alternative comments to use in the future to replace the offensive comment. After two years not much had changed in William’s ability to refrain from using offensive comments or ask questions that were considered rude or inappropriate.

I was tasked with spending an hour a week with William in regard to this situation. During our time together he would tell me how things were going at school. He wasn’t able to identify comments he had made that had gotten him in trouble or questions he had asked that had been met with rebuff. Before using these words his only goal had been to be friendly in seeking out social interaction with other students or teaching staff. He had not meant any harm by his words and really didn’t seem to know after using problematic words that they were indeed problematic.

I knew from working with William in the past that he learned more readily when he could see it written down. We started a running list of comments and questions. I tried to make it fun by rolling my eyes and saying very exaggeratedly, “Oh, my gosh! That’s one for our list!” After a few weeks William started asking immediately after saying something questionable, “Is that one for our list?” Here is a sample of William’s list:

YOU MAY THINK IT, BUT PLEASE DON’T SAY IT IF NOTHING GOOD WILL COME FROM IT

  • That jacket is ugly.
  • Why does your breath stink?
  • What you are talking about sounds boring.
  • Your feet look too big for your body.
  • I don’t like you as much as I like Jeff, but I do like you enough to talk to you when Jeff is absent.
  • It smells like feet in this lunchroom.
  • Do you have poop stains in your underwear?
  • If Miss Jones had a husband she could kiss him.
  • I never saw any clothes as big as Mr. B’s!
  • Green notebooks are the worst. (friend has green notebook)
  • My armpits stink. Want to smell them?
  • I can see boogers in your nose.

Over time, William could hit and miss guess when he said “one for the list.” This led us to look at how one might actually become a better guesser about having said “one for the list” before other people actually told them. (For more information on this see Learning the Hidden Curriculum: the Odyssey of One Autistic Adult). Once William was able to identify when he made a social error we worked on strategies to repair a conversational glitch. This process took most of the school year, but certainly paid off for William in terms of increased friendships and teachers understanding his struggles and being able to support him better.

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BOOKS  BY JUDY ENDOW

Endow, J. (2019).  Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology. Lancaster, PA: 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).  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 on August 19, 2016. Comment here.