Category Archives: Growing Up Autistic

The Predictability, Pattern and Routine of Stimming

March 5, 2016Activism/Advocacy, Growing Up Autisticart, autism, autistic experience, Diversity, first person account, neurology, sensory, social, visual routinesadmin

The neurology of a person with autism does not automatically organize the world outside their skin. When we are able to organize the happenings in the world we usually do so differently than neuro majority people.

As a young child I saw over and over how light from the sun interacted with water particles rising from the ground and with water droplets in the air. This repeated experience became useful over time in that I learned the predictability of this occurrence. I also learned the effects of various factors (such as clouds, rain, air temperature, wind, etc.) had on impacting the interaction of sun brightness with air and ground moisture.

By the time I was old enough for kindergarten I had an extensive experiential knowledge of sun sparkles and thus could put myself into the picture of the sunlight in various circumstances. Because I had figured out the predictability and pattern I was able to attain mastery over the situation that once took me by surprise, causing unfavorable behavior reactions! With this newly found mastery I was able to become part of the world around me, as literally seen in these paintings that now include the little girl of me. (Paintings are at www.judyendow.com Please see Morning-Chirp Sun Girl, Night-Song Sun Girl and Cloud-Breath Sun Girl.)

I especially liked the moon sparkles. They were much less intense. I noticed the moon sparkles mostly by looking through the window as I lay on my bed at night. I learned the predictability of moon sparkles as one season gave way to another. I loved the predictable repeating pattern of sameness that I could see in so many ways as I watched the moon sparkles each night through my window (Paintings are at www.judyendow.com Please see Moon Sparkle Winter, Moon Sparkle Spring, Moon Sparkle Summer and Moon Sparkle Fall).

Painting is Moon Sparkle Spring
available in packs of 5 greeting cards
and 3 print sizes
under the Art Store tab at
www.judyendow.com

It was wonderful to have learned so many kinds of order to the world around me – an order I learned as I learned the pattern of sun sparkles and moon sparkles across the seasons.

I had many opportunities to gain mastery over the blinding sun sparkles due to the fact that children growing up in the 1950’s played outdoors for many hours a day. Every day I interacted with what I saw by repeatedly trying to catch the sparkles and tails my eyes could see all around me. Looking back, I am so glad I grew up then and not now because back then children had much more opportunity for imaginative play.

If I was a little girl growing up today and displayed the repetitive behaviors of catching sun sparkles and world tails it would likely be referred to as stimming and adults around me might try to stop the behavior. If that had happened I may never have sorted out the world by learning and using the various predictable patterns of atmospheric interaction between the elements of light and water. The behavioral stims of repeatedly trying to catch the sparkles and tails I could see, but were not seen by others, helped organize the world around me.

This was important because as an autistic I thrived on predictability, sameness and routine. I organized my world in an unusual way using predictable atmospheric interactions of light and water.

Before I had my world organized I experienced lots of confusion, chaos and change each day. It was unsettling and anxiety provoking. It caused me to want to sit still and only look at books for long periods of time when I was indoors. For some children this perception of constant confusion, chaos and change in the world can precipitate meltdown behaviors.

Often time behaviors that don’t work well in the world develop in response to the autistic perception of confusion, chaos and change. This is not intentional, planned or defiant behavior, but instead an unplanned reactive behavior.

The way to provide support to prevent an autistic from a repeat of this felt experience of confusion, chaos and change is to allow for a high degree of predictability, sameness and routine in his world. One of the ways we provide this for ourselves is through stimming. The repetitive nature of stims can be highly organizing. Regardless of the stim, it certainly provides a high degree of predictability, sameness and routine.

Most of the time stims are helpful and allow us to participate in life. For me, it helps to organize the world outside my skin because while stimming I am able to unravel the everyday ordinary barrage of sensory and social information that becomes overwhelming. I am so glad nobody stopped my stims when I was a little girl. It was simply thought of as playing outside when in reality I was busy at organizing the world – finding the predictability, pattern and routine outside my skin.

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

Endow, J. (2009b). The Power of Words: How we think about people with autism spectrum disorders matters! 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 6, 2016.
To leave a comment at the end of this blog on the Ollibean site click here.

Autistic Patterns of Thoughts and Emotions

September 30, 2015Activism/Advocacy, Growing Up Autisticautism, autistic experience, Diversity, first person account, neurologyadmin

I use the movement of things outside of me for purposes of thinking and of processing feelings. Recently, autistic friends have let me know that most people in the world do not do this and that it is a rather common autistic experience. I have no idea how common so would very much appreciate autistic weigh in here.

Thinking
My thoughts are all in colors and pictures. Usually there are sounds attached, but not always. To think I need a way for the colors and pictures to move. When my sensory system is calm and integrated the thoughts sometimes move on their own accord. When my thoughts are not moving or moving too slowly I simply borrow from the archives. This means that my words come from something previously thought about and stored. I just pull from the archives and run the script. Sometimes I wonder if this is simply a form of echolalia.

When I am a little bit disregulated I am able to pull from the archives and run the scripts, speaking aloud their words, pretty fluidly. I doubt most people realize the thoughts are not original, but instead historical. As I become more disregulated I have higher probability of pulling something from the archives that isn’t a particularly good match for the current conversation. I also have an increasingly narrow swatch of the archives available to see and pull from. The best match from the limited swatch is at best not relevant and at worst downright offensive to those around me. It is one reason why I work hard at staying regulated – I want the lowest probability of unintentionally offending friends and co workers in my day to day life.

Emotions
My emotions are also in colors and pictures, sometimes with sound and always with a high degree of movement. The more intense the emotion the more patterned the movement of colors and pictures become. Emotions that arise from interactions with others can get really big really fast. The colors and movement pattern of the emotions are infused with snapshots of the current situation. As the pattern of color movement happens, portions of the snapshot are stretched and highlighted. When the emotions are positive the stretching and highlighting of the snapshots are generally either amusing or very beautiful. When the emotions are negative it makes the snapshots look similar to horror movie scenes with grotesque exaggerations.

The visual emotion scenario my brain creates runs in a predictable sequence over and over, each time through with an increasingly vividness. Thus, a good and positive sequence can become quite nice and very relaxing and generate soft feelings towards others that are in the pictures, while a difficult or negative sequence becomes more and more horrifying as the loop recycles over and over. This is how I experience emotions.

The Patterns of Thoughts and Emotions
Besides my thoughts and emotions being comprised of colors and pictures and their sounds and movements they also occur in the context of unlimited patterns and combinations of patterns. I do not have control of the patterns any more than I have control of the colors, pictures, sounds or movement. Or perhaps it would be more accurate to say I am unaware of any control. I am always hopeful that one day I will be able to exert control over some of this internal thinking and feeling process as I imagine that would make for an easier time interfacing with people around me.

The patterns are important, because whether in thought or in emotion, that is where I can impact a change. When I have a friend who will listen to my thoughts or is willing to hear the same patterned emotional story, after several times through I can latch onto something – usually a snippet of color or movement that comes with their words – that becomes helpful in breaking up the pattern and heading towards a new or different pattern. Practically this means I am able to shift an emotion or incorporate new words or ideas into my thinking.

Most of my friends are not able to hang in there beyond the second or third pattern repeat. If it is a thought pattern I am attempting to repeat they stop me and tell me I have already told them my views. Sometimes I am perceived as stubborn and controlling because I am saying the same thing over without incorporating their ideas. This makes them feel like I am talking at them rather than with them about the topic at hand. As soon as I recognize this I stop, but typically the damage has already been done in terms of how people view me.

When I am in the midst of an emotion pattern I repeat the visual loop I am seeing over and over. My friends report they feel they are not helpful as I am just repeating myself and not taking their words into consideration. They tell me they feel they are wasting their time because I am not listening. Typically, they walk away in frustration.

The Resolution of Difficult Thought and Emotion Patterns
Most friends are not able to be helpful to me in interrupting my negative thought or emotion patterns only because they do not see that sticking with me while I replay the pattern might be helpful. Most friends seem to need to be able to make a positive impact the first time through. Really good friends allow a second or third round of my repeating pattern, but then do not see any benefit in continuing on in a cycle they seem unable to be helpful in altering.

Because people are generally not very helpful to me in changing the patterns of negative thoughts or emotions I have other ways that are helpful. All of the helpful things for me involve some sort of movement outside of me that has either nature sound or no sound attached to it. When I put myself in these contexts I allow the thought or emotion pattern to run repeatedly until some element of movement outside that pattern presents itself in a way that my neurology can latch onto. Once this happens, the thought or emotion pattern can start to change. Sometimes this can happen in a few hours, but most of the time it takes several days. It is hard work. There are a few thought and emotion patterns that I have been trying to interrupt and change for years.

If I do not have lots of energy I find it helpful to be outdoors. Sometimes going for a walk, other times just sitting outdoors in solitude watching the patterns of nature is helpful. Eventually, something in nature’s pattern will hook into the thought or emotion pattern and effect a positive change.

If I have more energy I can read a book or engage in creating a work of art. This allows for the same result of something in the pattern of the reading or the act of creating to hook into the thought or emotion pattern to effect a positive change.

The interesting thing about this is that generally I become cognitively aware before my thought or emotion pattern changes. For example, if I misunderstood something with a friend that produced a negative emotion pattern and then discuss it with my friend, I will cognitively understand my friend’s perspective before I am able to interrupt the emotion pattern.

Practically, this means that even though I understand my friends words and the words do inform me that the pattern I have running is now faulty, my neurology will continue to repeat the pattern and to be experiencing the negative upsetting emotions until some movement pattern outside me can interrupt and change that internal pattern. My friends sometimes interpret this as me not being able to take their perspective. I know it looks like I am stubbornly hanging onto my false take on the situation even though my friend has told me their take on it. It is exasperating to them. It is to me, too.

Even though I understand their words and their perspective the pattern of thought or emotion is still running. It is more dominant and powerful than I care for it to be and I am not able to will it away. Believe me, I’ve tried! Instead I need to work with it by finding some other movement to hook into that will serve to interrupt and change the pattern to match my newer cognitive understanding.

Here is a poem from my childhood that illustrates using a movement pattern in nature to be able to think about my thoughts from the day. When the pattern of nature’s movement was over, so was my ability to continue thinking. At the time I wrote this poem I did not have the words to explain it further than the words of the poem. Today I have this blog. That is progress – slow – almost 50 years in the making, but progress in understanding my own autistic neurology! (Note: I no longer see myself as an alien on this planet, but did back then.)

Dog Walk Air Colors

brown, soft hush puppy skin folds swaying too and fro
as short legged clippety-clops echo off the sidewalk

the pink-yellow air of a going down sun
allow the girl and the dog forward walking room
into the future

by providing a reliable unchanging pattern of air color rhythm
every night after day, every day after night
predictably reliable over and over, again and again

the girl lent the air colors a space inside her
adopting the yellow-pink air
along with it’s early-time night of lavender-blue
to herself

then…
tying the dog by his house she went back inside her alien self
to hide from a world she didn’t belong to and was not a part of

but one from which she could see and borrow dog walk air colors
to become for a moment something bigger
than the alien girl that she was

– Making Lemonade: Hints for Autism’s Helpers, pg. 100

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. (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 Employement. Shawnee Mission, KS: AAPC Publishing.

Autism and Visual Detail

June 12, 2015Activism/Advocacy, Autism and Aging, Growing Up Autisticart, autism, autistic experience, Diversity, first person account, movement, neurology, sensoryadmin

Because of my autism I often experience sensory overload. Many times this is painful. I have learned that by keeping my sensory system regulated I can avoid some of the pain. Over time, in the process of becoming more regulated, I have found ways to enjoy my unique sensory system.

One of the things I enjoy is a degree of beauty I can see in many things around me. I don’t think neurotypical people often see the detail I do. The reason I think this is because when I comment about something beautiful I am seeing others often do not see it.

Sometimes my ability to see details that others cannot has gotten me into trouble. As a teen in an institution, when asked if I saw things that others don’t see I responded in the affirmative. This ability was mistaken as visual hallucinations rather than a function of my autistic sensory system. I was medicated in a way that turned out to be quite detrimental (Endow, 2009).

Other times my ability to see details in the world around me allows me to see beauty that others cannot see. One example of that is I can see mist rising up from the surface of the earth and I can see that interacting with light. If you’ve ever been on a lake, early in the morning you can see the mist rise up off the water. I am able to see that interaction of light and water particles pretty much all the time in varying degrees.

Because I have learned that it is not in my own best interest to talk about what I can see I have learned to use art mediums to show aspects of the way my autistic sensory system presents information to me. One of those art mediums is acrylic paint. There is a series of paintings illustrating this concept in Painted Words: Aspects of Autism Translated (Endow, 2013). You can also see these painting at my website www.judyendow.com under the Art Store tab. Here is one of example of this series of paintings called Lake Tail Mist.

It is important to remember not everybody with autism will perceive things exactly the way I do. Even though, as a group, we tend to have unreliable sensory systems, the way it plays out is not exactly the same from one individual to the next. But hopefully, when people look at my paintings they now have another way to understand that sensory perceptions of autistic folks can be different from their own perception of the world.

RESOURCES
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.

Originally written for and published by Ollibean on June 7, 2015

Autism and Meaningful Employment

May 28, 2015Autism and Aging, Communication, Growing Up Autistic, Hidden Curriculum, Social Considerationsautism, autistic, autistic experience, employment, first person account, sensory, transitionadmin

Autism is a developmental delay. This is particularly important when it comes to our youth who are at the age typical youth graduate from high school and launch into their adult life. Typically developing youth are ready to go off to college or become employed in a full time job upon high school graduation. For a few, this happens immediately upon high school graduation, but for most it takes another process where they work a job, attend higher education, and move away from the family home – either all at once or a little at a time so that over the next few years the high school graduates find their starting place in the big wide world.

For our youth with autism, because of the developmental delay, that launching takes different trajectories. For some, attending high school as a special education student in the age 18-21 category allows for further skill development and potential job placement. This is great if the job placement is looked at as a first job.

We have all had our first jobs where we learned all about the world of work – about things such as being on time, arriving at work ready to engage in the job, managing our personal and social lives outside of work hours, how to fit in and have conversation with the various groups of people (co-workers versus the boss) along with all the other numerous learning experiences our first job afforded us.

What I see happen all too often with our 18-21 year old special education students who remain in high school and who are supported in their first job is that first job is thought of as the end of the story. What should be a first job experience often comes with an assumption that it is a life long job placement. This is wrong on ever so many levels. Just think back to your first job and consider how rewarding and fulfilling it would be if someone else decided that would be your job for life.

Another problem our students with autism face is they are most often put into job programs along with other students with developmental delays without consideration of their cognitive ability. This matters. For developmental delays other than autism, cognitive ability (as measured by intelligence scores) is typically lower than average. Individuals with autism may have less than normal intelligence scores, but they are just as likely to have normal and even above normal intelligence. And yet, because of autism, they also have a significant developmental delay. Shredding paper, wiping down tables in fast food places, or other similar jobs might be a good first job, but will not likely be a satisfying life long job for someone of normal or above normal intelligence. Because our job programs for students with developmental delays are geared towards those who also have significantly decreased cognitive abilities, the programs are often poor matches for students with autism.

The developmental delay in autism also looks different across adulthood than it does for those with intellectual disability. People with autism get their diagnosis due to differences in social, sensory and communication areas. These delays in childhood often show improvement in individuals across the lifespan. This is different than intellectual disability where IQ is fixed and does not improve over the lifespan. Autism is a developmental delay. It is not stagnation! Youth and young adults with autism continue to make gains develop over the lifespan.

To improve across the lifespan, the areas affected by autism – social, sensory and communication – are the areas that need to be addressed in transition programming for our youth with autism. All the employment and independent living skills need to be taught with this in mind. I co-authored the book The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment to address some of the areas our youth with autism need in order to be successful.

Something happening right now in my corner of the world to assist youth with autism to transition from high school and to eventually take their place in the world is a project called Meaningful Employment at Common Threads near Madison, WI. This project was chosen as a finalist for the State Farm Neighborhood Grant. The winners of this $25,000 grant will be chosen by popular vote on Facebook. The top 40 of the 200 finalists will each receive the $25,000 to use for their project. We desperately want to be in the top 40. We plan to purchase the startup equipment for a licensed commercial kitchen. This is a natural next step for our transition programming to afford those in our cooking class to be supported in the next step – getting their first job!

Please vote for our project. We are currently at 54 on the leader board. Help us make it into the top 40 by voting each day through June 3, 2015 – remember to check the box to give us all ten votes each day you vote.

To vote: First get onto your Facebook account and then use this link

https://www.state-assist.com/cause/1501729/meaningful-employment

Please pass around to any person or group on Facebook who might be interested in helping us make a difference when it comes to employment for youth with autism. Know that I thank you from the bottom of my heart!

Sincerely,

Judy Endow

REFERENCES

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.

Common Threads Family Resources Center, located minutes from Madison, WI, offers school and mental health programs geared toward individuals affected by autism, behavioral disorders, and mental health challenges. Our experienced and talented team of professionals creates a daily environment of acceptance and growth where students and clients flourish. http://www.commonthreadsmadison.org

State Farm Neighborhood Assist is a crowd-sourced philanthropic initiative that lets communities determine where grant funding is awarded, exclusively through Facebook. The initiative utilizes the State Farm Youth Advisory Board to vet submissions for causes and allows Facebook users who download the free State Farm Neighborhood Assist application to vote for the final 40 grant winners. The program has been inspired by the incredible number of neighborhoods that are coming together to solve a problem or improve their community. https://apps.facebook.com/sf_neighbor_assist/

I Paint to Share My Autistic Experience

March 30, 2015Activism/Advocacy, Growing Up Autisticart, autism, autistic experience, first person accountadmin

I started painting with acrylics in 2012. I wanted to use that medium to illustrate aspects of my autism. To date I have written several articles and books along with speaking in three countries about aspects of autism. Painting is one more way to explain some of the nuances of autism to those who might be interested.

Painting allows me to show perceptions of the world that I see with my eyes as delivered through the neurology of my autism. I match up what I see with the colors and movements of paint on canvas paper. I have not taken classes about painting, other than a one-hour lesson where someone allowed me to watch him paint and ask questions about painting supplies and techniques. I determined after that hour that I could learn to paint.

So, now I paint. I just do it and really do not know if I am doing it correctly or not. What is important to me is the finished product – a painting allowing others to be able to see what I see.

It took me most of my life to realize that what I see isn’t what most other people see. I want people to understand some of the aspects of my autism that I cannot expediently explain with words, but can readily show by painting.

One of those aspects of my autism is something I call fractured vision. It typically occurs when I am in sensory overload. What I am looking at divides up. Imagine a picture that is suddenly cut up into several pieces. One day when this fractured vision phenomena was occurring, I wondered if I might be able to illustrate it through painting.

To illustrate this concept, I copied what was happening by cutting a painting into the pieces my visual perception was delivering to me at that moment. Over the course of a few weeks I took each opportunity of real-time fractured vision as I experienced it and showed what happened by painting and then cutting the painting into the fractured pieces my eyes were delivering to me.

Please know that not all autistics experience the world in the same way I do. The more salient take away point here is that more than 90% of autistics have sensory system differences from the neuro majority population (Baker, 2008 and Baranek, 2006). Those differences impact all of who we are and how we navigate in this world. Because most people don’t experience what we experience there typically are not words adequate to describe it.

When I was growing up, and as a young adult, whenever I would try to describe my experience either it was discounted as not possible, I was said to have a big imagination or it was thought that I was hallucinating. If you want to read more about my story you can do so in the book called Paper Words: Discovering and Living With My Autism (Endow, 2009). From my early 20’s until my late 50’s I refrained from talking about my experiences. It kept me out of psychiatric institutions and that was a good thing!

Today I am braver and I am now in charge of my own life so am able to talk about aspects of my autism without needing to worry what will happen if others do not believe me. At this point in my life others do not have the power to decide my experiences mean I am in need of a psych hospital – at least they no longer tell me this AND even if people would think it, there is no longer anyone who has the power to make it happen. This helps me to be brave and speak out and show my experience through painting.

Note: To see paintings illustrating fractured vision look in the 2013 Gallery of the Art Store at my website. If you would like to see a larger collection of my paintings along with words explaining the aspects of autism they illustrate please see the book called Painted Words: Aspects of Autism Translated (Endow, 2013).

Greeting cards along with prints in three sizes  available for purchase at the  Art Store on www.judyendow.com

REFERENCES
Baker, A. E., Lane, A., Angley, M. T., and Young, R. L. (2008). The relationship between sensory processing patterns and behavioural responsiveness in autistic disorder: a pilot study. J. Aut. Dev. Disord. 38, 867–875.

Baranek, G. T., David, F. J., Poe, M. D., Stone, W. L., and Watson, L. R. (2006). Sensory experiences questionnaire: discriminating sensory features in young children with autism, developmental delays, and typical development. J. Child Psychol. Psychiatry 47, 591–601.

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

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

Originally written for and published by Ollibean on March 11, 2015.