Autism and Measuring Normal

Even though people described me as in my own world as I was growing up, I was in the same world as every other human being. I could not help it that other people could not see the details of the world such as the sun sparkles and the misty tails rising up from the ground early in the morning like I could, but that didn’t mean our worlds were different.

Instead our experience of the same world was different. My experience was much more robust because I had ever so much more to see than most people. I could also hear in a much more robust way than most people. In fact, my sensory experience of the world in general was always to a much higher refinement and greater impact than others report.

If we used my experience as the norm then all the typical people would come up as very lacking. But we do not measure experience from the most to the least sensory quantity or quality perceived. Instead we measure according to what most of the people perceive and label that as normal. Then, any experience that does not fall into this normal range of experience is labeled abnormal and people with this abnormal experience are said to be lacking.

If the truth were told, whenever the neurotypical yardstick of normal is used to measure me I do not measure up to be very many inches. (Endow, J., 2009a, 2009b, 2013) Because there is not a good way to measure the things that make me be me those things go unmeasured. Instead I am measured by the yardstick of what makes you be you and am found to be lacking.

Deficit based language in the field of autism is used for diagnostic purposes. A diagnosis is important in many regards because it can provide access to accommodations and supports, needed services and even a disability income and health insurance in adulthood for those who need it. The problem with deficit-based language comes when we take that deficit language out of the diagnostic arena and start using it to describe the humanity of a person with autism.

It is true that autistics are not like neuro majority folks and that when measured we often land outside of the majority norm. Geniuses land outside of the majority norm, too. Landing outside of the norm does not equate to mean less than as a human being.

Personal Questions for Self-Reflection:

  • Do you confine the use of deficit-based language to the diagnostic arena of Autism Spectrum Disorder?
  • How do you think about what is normal and what lies outside of normal? Do you want or need to change your thinking?

When autistics are treated as equal human beings positive relationships are more likely to develop. This is important because people with autism are generally able to learn new things and to access their highest level skills and abilities in the context of a positive relationship. (Robledo, J. & Donnellan, A., 2008).

And yes, we actually have research to show this – quite sad to need to “prove” autistics respond to positive relationships just like other human beings. Just the idea that this research needed to be done is a reflection of the world’s continuing erroneous presumptions about autistics. Hopefully, research like this will help change the faulty perception of the world about autistics.

Personal Questions for Self-Reflection:

  • In your heart of hearts do you think of autistics as equal fellow human beings? If you are not pleased with your current thinking know you can change it.
  • Do your relationships with autistics have a level of shared high regard for one another? What evidence do you have to support this?

In conclusion, please don’t allow yourself to write off autistics as “in their own world.” This only encourages division – and us-and-them dichotomy – when, in reality, we are all in one shared world. Autistics tend to experience the world with a higher degree of sensory awareness and often interact with or guard against the impact of this experience by employing behaviors that can look different or unusual to those who don’t share the autistic sensory experience.

Saying that someone is in their own world tends to give permission to disregard that person and to invite others to think of him as less than other human beings. When this happens everyone loses, including you. So, if you talk about a child, teen or adult autistic as “being in his own world” will you please stop?

Photograph of sky and red bougainvillea . Text reads Photograph of sky and red bougainvillea . Text reads "Saying that someone is in their own world tends to give permission to disregard that person and to invite others to think of him as less than other human beings. When this happens everyone loses,including you. Judy Endow on Ollibean "

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 Employment. Shawnee Mission, KS: AAPC Publishing.

OTHER REFERENCES

Robledo, J. A. & Donnellan, A. M. (2008). Properties of supportive relationships from the perspective of academically successful individuals with autism. Intellectual Developmental Disabilities. 46 (4), 299-310.

I WRITE ABOUT

 #autism

#neurodiversity

#accommodations

About the Author:

Judy Endow, MSW is an author, artist, and international speaker on a variety of autism-related topics. The award winning Paper Words, Discovering and Living with My Autism ,  Learning the Hidden Curriculum: The Odyssey of One Autistic AdultPaper Words, and many other wonderful books can be found on her website JudyEndow.com.

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