Tag Archives: autistic experience

Autism Awareness and Autism Acceptance

Awareness means we know what is hard for us. As we grow up autistic we are measured against the yardstick of “normal” in many ways over and over. Thus, autistic children often have a keen sense of who they are NOT. This deficit-based understanding may be necessary in the diagnostic realm, but it does little to support a healthy lifestyle. Who we ARE in this world – our abilities, strengths and interests – provide us with a satisfying life because that is the way it is with human beings. And yes, autistic people regardless how autistic you think they may or may not be, are ALL human beings. This means ALL autistics have intrinsic value.

Awareness focuses on the deficits – on understanding the deficits of the autism diagnosis – which leads to general assumptions by society of a substandard, less than group of people and it spirals downward from there, as we all have seen in today’s status quo autism rhetoric, stereotypes and assumptions. Awareness extends a hand to the erroneous idea of a flawed group of substandard human beings. Awareness often provides the fertile soil supporting the growth of inspiration porn about our tribe.

Acceptance focuses on autistics rather than on autism. And yes, there is a difference. Autism is our diagnosis; it is about what is hard for us. Autistic is about who we are as autistic human beings; being autistic is about who I am in this world, how I function and what I contribute. Acceptance lends itself to ideas of equality, the premise of different rather than lesser creatures. This can lead to an upward spiral towards embracing concepts such as neurodiversity, inclusion and universal design.

For society, when awareness is the focus – society understands the deficits and which, when unbalanced with the humanity of autistics, often result in a hopeless and burdensome feeling. I believe when autistic acceptance becomes society’s focus we will shift to looking at abilities, strengths, interests of autistic individuals, which will then allow us our place in the fabric of society – as actually equal human beings.

So, at this point in time, as a society we have mostly Autism Awareness, especially during the month of April. We also do have a tiny wee bit of Autism Acceptance, mostly from autistic people themselves and their allies. When society is focused on Autism Awareness deficits of autistic people and inspiration porn about them are highlighted. When society is focused on Autism Acceptance strengths and abilities of autistic people are highlighted – not the fact of their autism.

Going forward I yearn for the day when all autistic children grow up knowing who they ARE (a unique mixture of their interests, strengths, abilities) rather than for who they ARE NOT  (the diagnostic deficits of their autism) as this is what builds a satisfying human existence in this world. We must keep on keeping on as we’ve a long ways to go until autistics are but a part of the fabric of society.

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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 April 28, 2016.
To leave a comment at the end of this blog at the Ollibean site click here.

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 detailed 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 – an 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?

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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.

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.

Originally written for and published by Ollibean on February 18, 2016.
To leave a comment at the end of this blog at the Ollibean site click here.

Autistic Neurology or Psychiatric Symptomatology?

Sometimes autistic neurology – specifically our style of thinking and the way our brain handles information bumps up against what can appear to be psychiatric symptomatology. This has happened to me many times over the years. My style of thinking is visual along with being quite literal and concrete. I understand myself and, in general, thoughts, ideas and concepts by having or creating an object or visual representation of that construct. Here is an example:

“…in my life, I have come to a fuller understanding of the parts of me as represented by actual pastel colored stones. I have the collection in a small box. Each stone holds for me the information about a segment of my history. This is why, as a child, information learned in one setting didn’t automatically transfer to another setting for me, as it seemed to do for others. For example, the “home Judy” might be able to tie shoes and know how to make a sandwich, but the “school Judy” would not be able to access these skills” (Endow, 2009a, pg. 17).

In the field of autism we say individuals are not very good at generalization. We try very hard to help students perform learned skills in a multitude of environments to support generalization. I wonder if we had a way to discover how our student was processing, recording, storing and retrieving information if we might be able to develop a system for them to generalize. Once the system was developed would generalization be able to happen? Nobody knows as it hasn’t yet happened, but it is an interesting question.

In the field of mental health we tend to see Dissociative Identity Disorder when there are distinctly different parts of one person, sometimes the parts unknown to each other. I was actually diagnosed with this back when it was called Multiple Personality Disorder. Today, I believe this historical diagnosis more accurately represents my autistic style of visual thinking in a very literal and concrete way along with the way my neurology processes, records, stores and retrieves information.

“Thus, this first pile of stones was comprised of several pastel-colored bits representing the inside unconnected parts of me –

WHO
 I was in

            different places,

                        much of
the know-how of

                                    the various WHO’s

                                                unrelated to
each other,

                                                            each WHO of Her

                                                                        represented by

                                                                                    a separate
pastel bit of

                                                                                                colored stone”

                                                                                     (Endow, 2009a, pg. 17).

Illustration of Concrete Thinking Impact
Over time, as I grew from a child to a teenager, and then into the various stages of womanhood, I was able to look back over the lifetime of these pastel stones. Each of them had its own bit of Me recorded and encapsulated into an entity of its own. These pastel stones held my history, each era distinct and separate from all the others, with none of the content of the stones overlapping.

Illustration of Information Recording and Storage Impact
No wonder I often felt unconnected to my past, as if I was continually starting my life over! I came to understand that this was a function of the way I recorded and stored the happenings of my life – each bit encapsulated in its own entity, never intertwined with any other events. It often felt to me as if I was lost from myself.

Illustration of Information Retrieval Impact
When the content of these pastel stones became available to me in my thirties, I was finally able to piece together my past into one whole. During my forties I was able to think of myself as one whole person with a past, a present and a future yet to come. Today I have a good sense of my own personhood, being able to line up the story of each stone chronologically to tell my history and also to imagine forward into the future. I do this by thinking about what the story of the next stone will show. I have to be able to visualize a new pastel stone inside me before I can plan something into the future, like an upcoming vacation, for example (Endow, 2010).

I think it is important to start discussing the issue of when characteristics of autism in general and psychiatric symptoms in specific may be a reflection of autistic neurology – part and parcel of how one thinks and how one processes, records, stores and retrieves information.

One reason it becomes crucial in teasing out whether we are looking at autistic neurology or psychiatric symptomatology is because autistic neurology need not be fixed. Instead, we all simply need to understand how it works for specific individuals and then based on individual self-determination we can proceed. For example, in my life, I sometimes explain how I store and retrieve information when I need extra time to answer a question and sometimes I choose not to explain.

On the other hand, when something is reflective of psychiatric symptomatology, then the supports and treatments available to general public need to be available to the autistic too. It is not appropriate to attribute psychiatric symptomatology to the autism. It is appropriate, however, to treat psychiatric symptomatology of an autistic person through the lens of autism. This is another subject perhaps for another blog…or book, and for another time.

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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 March 6, 2016.
To leave a comment at the end of this blog on the Ollibean site click here.