“As a child I eventually came to love being outdoors, but I didn’t always love it. In fact, I can recall the bright boldness of the sun being painful and of trying to duck away from it. By the time I was walking I knew this brightness was called the sun. Mostly I liked the sun sparkles, but some days I protested because the sun was so bright as to turn its sparkles into painful burning to my eyes. I became quite aware of which direction the pain from the bright sun came from at various times during the day (Right Sun and Left Sun). As a toddler I was tracking the sun and its amount of brightness so as to avoid the sensory impact of being hurt by this fireball as much as possible.
I noticed the sun made the air wavy (Sun Waves) right before it became too bright to tolerate. Because the wavy air was attractive to me I did not immediately put it together that this was a warning of the too bright, eye-hurting sun that would quickly follow. Thus one minute, I would be happily content sitting in the sandbox enjoying the sun waves I could see all around me while the next minute protesting and hiding in the shadows of the garage to avoid the sun. I did not have language to use to explain this.
Considerations When Working With Others
- Sometimes children seem content one minute and then scream and tantrum the next minute. Often people are perplexed because it seems like nothing at all happened to cause the abrupt change in behavior. Even though that is your experience as a person looking on, remember your experience is rarely the experience of the autistic!
Atmospheric or environmental changes that seem so subtle as to not even be noticed by a neurortypical person (NT), are often experienced as a huge problem by an autistic person. Sometimes the magnitude of this difference is the difference between experiencing comfort and experiencing pain.
✔ Does your child go from appearing content to having a tantrum in no time at all?
✔ If yes, might there be a sensory component?
- It is more helpful to acknowledge that something is wrong when a child is in distress than to say nothing is the matter only because that is your perception or experience of the situation. To tell someone who is experiencing pain or discomfort that nothing is wrong undermines the development of a trusting relationship. When I find myself in these sorts of circumstances with students I simply say, “We will figure it out.” This serves to align me with the student as a problem solver even when I do not yet understand the problem.
✔ What phrase might you use to align yourself with your child even when you do not understand the difficulty your child is experiencing?”
Note: This blog and painting are an excerpt from Painted Words: Aspects of Autism Translated (Endow, 2013, pp. 24-25).
Sun sparkles from the sky to me
A present to my soul
Brightness, lightness now reigned in
The girl her mastery shows!
As a child I often tried to catch the sparkles from the sun.
I later learned as an adult that most people do not even
see these ever-present-to-me sun sparkles! Each day my
autism neurology presents me with a unique mixed bag
of blessings and challenges.
(Note: Poem and words appear on back of Sun Waves
Left Sun is the tittle of the acrylic painting by Judy Endow. To purchase greeting cards, prints or originals see art at www.judyendow.com
Right Sun is the tittle of the acrylic painting by Judy Endow. To purchase greeting cards, prints or originals see art at www.judyendow.com
Sun Waves is the acrylic painting by Judy Endow shown in this blog. To purchase greeting cards, prints or originals see art at www.judyendow.com
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.