Tag Archives: autistic experience

Introduction to Newest Book: Autistically Thriving

October 14, 2019Autism, Autistic Neurologyautism, autism acceptance, autism research, autistic experience, conversation, Diversity, mental health and autism, neurodiversity, neurology, reading comprehension, self-determination, sensory, teachingadmin

This blog is actually the introduction that appears in my newest book (Endow, 2019, pp. xiii-xiv) available as of last week.

MOST ANYTHING ABOUT AUTISM and learning typically start out with the deficits of autism responsible for the problem experienced by the autistic. Then, it is followed up with ideas on how to address the deficits so as to impact the problem. If I were to start this book that way I would next talk about the diagnostic criteria. Here is what the DSM-5 says:

ASD Diagnostic Criteria

Persistent deficits in social communication and social interaction across multiple con-texts (current or history)

1. Deficits in social-emotional reciprocity…
2. Deficits in nonverbal communicative behaviors…
3. Deficits in developing, maintaining and understanding relationships…

Restricted, repetitive patterns of behavior, interests or activities… motor movement, sensory, sameness, routine, xated interests in objects or topics
– Diagnostic and Statistical Manual of Mental Disorders, 5th ed., 2013

In case you don’t know how the DSM diagnosing works I can fill you in. We have our everyday people on the face of the earth. They make up most of the population. Because this group makes up the majority we have decided their behaviors are typical and we label them normal. Then, everyone else is measured according to how far away from normal they land. And if they land far enough away from normal in enough areas they get a diagnostic label.

By design, DSM labels are framed in deficit terms. And in terms of diagnostics this deficit language is helpful. However, it isn’t very often helpful when we take this deficit-based language out of the diagnostic arena and use it to describe who and what autistic people are in this world.

We are ever so much more than the sum total of our diagnostic deficits. So, let’s begin with

autistic people – who are they? how do they think? what are their strengths? their skills? their way of understanding the world? How do they understand other people?

All of my life, until very recently, I have only known what I am not. It is because autism is largely measured by absence of neurotypicality. My hope for the future is that autistics coming up behind me will grow up with a more positive sense of self – learning who they are in this world rather than who they are not.

In that spirit I write from a perspective shift. A self-determined life is empowered through comprehension of the context in which we live. Let’s start with autistic people and comprehension – reading comprehension and life comprehension. How does it work? How do we empower autistics, based on their neurology, to comprehend what they read and to better understand the foreign land in which they find themselves living?

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.

Toxic Autism Awareness: Fact from Fiction?

March 22, 2017Activism/Advocacyautism, autistic experience, Diversity, neurodiversityadmin

During the past week I have run into two different people in my personal life who have expressed erroneous beliefs about autism. Both people knew that besides being autistic myself, I am a therapist in the field of autism, have written many books and numerous blogs on various autism topics, and consult and speak internationally. Without a doubt, these people knew that I know about autism. And even so, they presumed their comments to be accepted fact so much so that they felt perfectly comfortable putting them forth as facts – never considering the information may not even be true about autism. In fact, if either of these folks would have at all been wondering or trying to sort out autism fact from fiction, I would have been the first person they would have asked. They were not trying to sort out good information from bad, but instead based their point of view on the “known” public perception of autism, presuming it to be factual.

Example One of Erroneous Public Perception of Autism

I encountered this public belief at the end of a story an older person was telling me. He was telling about an event where he ran into an old card-playing buddy. He really wanted to know what happened to his son, but was afraid to ask. I then heard all about this child who grew up during the time I grew up – in the 50’s/60’s – and all the naughty things this boy did. He tortured and killed the family pet, locked his parents out of the house so he could start it on fire, and put rat poison in the coffee canister to try to poison his parents. At the end of relaying these horrible deeds he said that kid was evil and if he were growing up today people would know he had autism, but autism just wasn’t known back then.

The autism proclamation at the end of this tale took me by surprise. This was from a person who I have known all my life. This person knows I am autistic and work in the field of autism. So, for someone who actually has known me for decades – I really don’t know how that person can believe evil is linked with autism. But then, that is part of the public perception. For myself, each time there is a school shooting, immediately after the initial wave of horror I feel, I wonder how long before the autism question gets raised. It almost always does.

Reporters typically lump autism and mental illness together. Today we know autism is not a mental illness. This doesn’t mean autism is better or worse than mental illness. It is just different. To complicate it further, some autistic people also have one or more mental health diagnoses. But this is beside the point for this discussion about evil people.

Those people who commit truly evil acts are not necessarily mentally ill or autistic. The Hitlter and Jeffrey Dahmer sort of evilness is out there. Thankfully, only a very small proportion of the population falls into this category. When something horrible happens it is human nature to try to come up with an explanation. The sense making that typically happens is that we tell ourselves the person committing the crimes is mentally unstable. We just have a hard time imagining anyone with a “right mind” such as the rest of us could do such horrible deeds.

One of the problems with this is that society has effectively used their sense making to draw a line between supposedly good and bad people. On the good side we have “normal” people. On the bad side we have people with mental illnesses and autistics. This sort of erroneous reasoning then makes it seem reasonable to be afraid of anyone with a mental illness or autism. People do strange things when they are afraid.

Example Two of Erroneous Public Perception of Autism

Several times a week I spend 2-3 hours at a public pool for the sake of maintaining sensory regulation so I can be my best at work and in my life. One day last week a woman in the locker room who knows I am autistic, with a voice of assurance and a rooting-for-me-on-my-side tone, told me I should not worry about having autism. She explained her belief that I am not autistic by telling me that I am nothing like Donald Trump.

WHAT????

She says something like; “It is all over TV this morning that Donald Trump is mentally ill. You are mentally ill with autism, but you are nothing like Trump. I wouldn’t worry about having autism if I were you. You seem as sane as me.”

All I could think to say was, “It takes all kinds to make the world go round. Even the ignoramuses amongst us.” she agreed, clueless I was indeed including her in a way as not to be offensive. It was the best I could do in that moment.

While I am not proud of my response, I am proud that I stuck up for myself. I only wish I had done so differently. Just the fact that both the people in these two examples had no qualms, no embarrassment, no sense that their words might be perceived as offensive or unwelcome shows how rampant these sorts of things are taken as real information about autism and about mental illness.

Our autism awareness campaigns of recent years have indeed made everyone aware of autism, but that public awareness does not match the facts. In fact, in many regards, John Q. Public is only aware enough of autism so as to be toxic to actually autistic people. This is serious. The definition of toxic by Merriam-Webster is “containing or being poisonous material especially when capable of causing serious injury or death.”

Today it seems socially acceptable to blame the evil behaviors of criminals on autism and reprehensible behaviors of politicians on mental illness. Don’t buy into this societally acceptable behavior. To buy into it is to perpetuate it. Each time you do so you are drawing that line between us darker, deeper and wider inviting fear to take up residence, distancing yourself from autistics and/or people mental illness, making us “those people,” the ones othered. In turn we are feared. Remember, people in power can do strange things when they are afraid. Is this the kind of world you want your children to grow up in?

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 March 16, 2017.
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Autistic Burnout and Aging

March 9, 2017Autism and Aging, Social Considerationsautism acceptance, autistic aging, autistic experience, Diversity, neurodiversity, sensoryadmin

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?

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 Difference in Visual Perception

February 7, 2017Autism and Mental Health, Growing Up Autisticautism acceptance, autistic experience, Diversity, first person account, mental health and autism, neurodiversity, sensoryadmin

As a child, people sometimes thought I was stubborn and resistant when I did not want to allow them into my space or to do what they wanted me to do. They did not understand the negative effect they had on me and on my surroundings, and at the time, I did not have the words to explain it.

Today I have the words and can explain. I do so in hopes that it might help others who may not yet have their own words. My experience will probably not be exactly the same as another person’s experience. However, there are often similarities in that when autistics youngsters do sort out the perceptions of the world around them they gain through the information delivered by their sensory system.

My sensory system tracked environmental phenomena. One phenomenon my system tracked was the sun sparkles I could see all around me. I know today that most people do not see this level of atmospheric detail. Another phenomenon of visual atmospheric information my neurology automatically tracked was what I refer to as world tails, which was the interaction of mist particles and sunlight in the air around me. This phenomenon was typically observed during early morning or following a rain shower.

Over time I made sense out of the ever-present sun sparkles and world tails I could see all around me. I organized much information about daily routine and expectations using the predictability of the sun sparkles. For example, when the sun sparkles were pointed, tiny and colorless I knew it was time for lunch.

Over time I learned to accommodate people according to the effect they had on the appearance of world tails. I have illustrated this concept by painting how the same world tail looks in a variety of situations where different numbers of people need to be accommodated. Here is a series of three paintings that I hope will help people understand how detailed sensory information delivered by autistic neurology is often useful to the autistic.

One Person Tail depicts only me – just the one person of me – standing in the world interacting with the world’s tail. The tail is beautifully shaped and the pieces making up the tail are easy to see with clarity of shape, arc and color.

One Person Tail

One Person Tail Intrusion illustrates the effect on the tail when I acknowledged the presence one other person. Initially, I did not interact with this person, but merely acknowledged his presence by briefly glancing his way and then shared the space with him. While the general shape of the tail is still pleasant to look at you can see the clarity of the individual pieces has faded. Instead of one clear consistent color it has turned into three colors. Additionally, each piece is fuzzier in quality. Some days I could handle this negative impact on my visual tail and other days I couldn’t.

One Person Tail Intrusion

Two Person Tail Intrusion illustrates what happens when two other persons are acknowledged and allowed in my space. The top of the tail flattens as if there is not room enough for the tail to stretch out to form its beautiful shape. The entire environment appears washed out to me. Whenever people need to take up the space and attention this happens. The colors of the tail shift to much less pleasant combinations of color that are bold and clash rather than harmonizing with one another. In addition, each piece making up the tail appears smudged and quite fuzzy. The beauty of the world’s tail is lost to me when more than one person intrudes on my space.

Two Person Tail Intrusion

Because I have learned the predictability, sameness and routine of the tails and used this as my anchor to make sense of the world, I could not allow the presence of too many people when I was a young child. When many people were forced on me the world became filled with confusion, chaos and change because I lost the tails that grounded me. When the tails were lost so was my stability. It became quite scary. Sometimes I reacted. Others called it “acting out.”

My intent was not to be stubborn and resistant, even though I understand my behavior probably did look that way. My intent was to preserve the tails due to their accomplished function of predictability, sameness and routine on me. I needed this order in my world to enable me to participate and engage. Initially I could engage with one person at a time as that was not too disruptive. It took several years before I could engage with more than one person at a time and learn to become part of a small group.

Today the world tails I can readily see (even though I now know most others do not see this level of detail) operate in the very same way. It is one reason I need much alone time. It restores me to see beautiful fully arched tails with clarity of particle brightness. I also know not to talk about this, except for the purpose of writing, because I have found people think I am hallucinating when I describe the sun sparkles or the world tails I can see. I was even once medicated for these supposed “hallucinations.” Hopefully, my written words are helpful to others towards encouraging understanding of autistic visual detail perception rather than the medicating of a non-existent, but assumed to be, psychiatric symptom.

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 February 2, 2017.
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Eye Contact and Autistic Dissociation: One Expample

January 24, 2017Activism/Advocacy, Autism and Mental Healthautism, autistic experience, Diversity, eye contact, first person account, mental health and autismadmin

“Dissociation is the ability to cut off from what is happening around you or to you. In its simplest form it is daydreaming. It is a skill all children have and which children with autism tend to overdevelop in managing a world they find overwhelming for a whole range of reasons.” (Donna Williams at https://blog.donnawilliams.net/2011/01/20/the-spectrum-of-dissociative-disorders/)

I can remember the overwhelming experience having eye contact with others sometimes had on me as a child. Too much bright, bold, painful sensory information was received when directly looking into someone’s eyes for a sustained period of time (see paintings below: Look Me In the Eye, Buzzing Bones, SIZZLE POP and STRIKE ME). Coping came by disengaging from the experience. I would hover up by the ceiling and watch the girl below who was me. When the girl looked into the eyes of people I would use the too much information she got to fashion alternatives to those eyes that would cut down on the overwhelming sensory information (see paintings below: Eye Fish, Eye Trees, Eye Land and Eye Tulip).

For me, the more dissociative experiences I had, the more refined my creations from eye information became. In the Goldenrod series one might not even realize the information originally came from eye contact. However, once pointed out most people notice the eye shape in the background (see paintings below: Goldenrod 2, Goldenrod 3 and Goldenrod 4).

Today I am able to use eye contact in a pretty typical manner most of the time. The sensory information I pick up from engaging in eye contact is no longer often painful. Many of my sensory needs have changed over the decades of my life. However, even today when I am under stress I do not have typical eye contact. Avoiding eye contact is one of the things I find myself automatically doing to minimize the quantity of incoming sensory information. I do not consciously think about avoiding contact. It just happens because that is how my brain works. I think this is similar to the way non autistic people do not consciously think about using eye contact each time they speak to one another. They simply do it because that is how their brain works.

Below is my story created in a poem and several paintings. This poem and the paintings are in my book Painted Words: Aspects of Autism Translated. The paintings are also available in three sizes of prints and in packs of five greeting cards at www.judyendow.com under the Art tab.