Category Archives: Growing Up Autistic

Is Autism a Disability or a Difference?

August 20, 2014Activism/Advocacy, Autism and Aging, Growing Up Autisticadmin

French Translation: L’autisme est-il un handicap ou use différence?

So many ideas in the larger autism community often become a debate. As an autistic this black-or-white, choose-your-side sort of thinking is very neurologically friendly to me. I like clear choices. But I also believe we are often unwittingly duped into believing we need to choose a side only because the idea is presented as a dichotomous choice.

“Is autism a disability or a difference?” is one of these questions posed as a dichotomous choice in the autism community. The way the question is posed gives the impression that there is one correct answer.

When Autism is a “Difference”

Many autistic adults would like if autism were recognized as a difference rather than a disability. Many in this group are the walking, talking autistics. We can go out in public by ourselves. Some of us are parents. We are your friends, neighbors and co-workers. We might seem to be a bit odd, but we can fit in enough to at least be allowed a place in the world at large.

Even so, being out and about in the community poses significant challenges. The sensory overload and neurological processing differences dictated by our brain along with ever present challenges with communication and conventional social understanding are such significant differences, even though we can accommodate for them, we are usually exhausted from doing so by the end of the day.

It seems to me that when we are able to be out and about in our communities unassisted by a hired person we are often expected to look and act like typical people regardless of the challenges imposed by the neurological difference of our autism. Because we appear to be like others, our difficulties and needs are thought to be our own personal problems. Even though we have an Autism Spectrum Disorder diagnosis that by definition means we have significant difficulties in many areas of life, others often look at us and ascribe negative intentionality and character flaws to us.

When Autism is a “Disability”

For some of us, the way our autism plays out in our body means we are faced with numerous obstacles to overcome every day of our lives. We may need communication devices, occupational therapy equipment and to employ personal care workers. For those of us whose autism presents challenges with these kinds of needs – we understand the disability aspect of our autism.

We often need a hired person to accompany us when we go out into the community or to support us so that we can communicate. In fact, we may require 24/7 support staff. And for some, our autism plays out in our body in such a way that people can see it as we approach! For us, people can see we need help. Rarely do others look at us and attribute our difficulties to laziness, lack of motivation, self-centeredness or any other negative character trait.

But because our autism is so visibly noticed along with the significant support we often need, people make other sorts of assumptions about us. Our needs are so obvious that people do not always consider that we also have strengths and abilities along with likes and dislikes. Often we are placed in menial jobs as adults (if we are even deemed capable of working) and our support staff is switched around as if people are interchangeable and relationships do not matter to us. We are not often seen as people who have preferences, desires, abilities, skills and talents as the time and energy of others are focused on the meeting deficits and needs imposed by our disability.

Negative Outcome of Choosing Disability OR Difference

As an autistic person when I am asked to choose one – either “disability” or “difference” – I feel like I am being asked, in essence, which part of me I would like to ignore. When I choose “disability” it means my talents, strengths, abilities and preferences are ignored. When I choose “difference” my very real difficulties and needs are not only ignored, but I am often blamed for what others consider my stubbornness in hanging on to negative “character flaws.”

Might We Incorporate Both Disability AND Difference?

What if we all chose both disability and difference? Would we then be totally ignored or totally supported? There it is again – another dichotomous choice posed as if it were a real choice!

In the meantime, please know when you ponder whether autism is a disability or difference this is a false choice sort of deal. It serves nobody well and has poor outcomes. And yet we somehow feel that we need to choose between disability or difference. Why is that?

Painting is Lake Tail Mist
Available in sets of 5 greeting cards
and acrylic prints in three sizes
in the Art Store 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.

French Translation
L’autisme est-il un handicap ou une différence?
Translation/traduction: Marie Lauzon, C. Tran./trad. a. (Canada) marielauzon.com

Originally written for and published by Ollibean on June 20, 2014

Crossing Sign Conundrums

August 9, 2014Autism and Aging, Growing Up Autistic, Hidden Curriculumadmin

Over the course of my life I have seen many kinds of crossing signs. When I go to a college campus I drive past a wildlife sanctuary where a duck crossing sign is posted. Each spring mama ducks line up near their sign and lead their babies across the road while the cars waited. There were lots of ducks and some days the wait for motorists can be up to ten minutes.

Every winter when I drive along a county highway to visit a friend I see a snowmobile crossing sign. A snowmobile trail is on one side of the road. A restaurant is on the opposite side of the road. Snowmobile club members cross the road at their sign and then park their snowmobiles at the restaurant while they are inside.

One summer a new sign was erected by the fire station. It announced to all that indeed the fire trucks would be crossing the road as they came out of the fire station. I personally thought the sign was not necessary. After all the fire trucks had no choice. They had to cross the road when coming out of the station

When my son went to college I discovered several pedestrian crossing signs on his campus. During passing time students would cross at their sign, often in hoards and most of the time seeming oblivious to drivers. They definitely knew they had the right of way!

As a visual thinker who has learned this pattern to crossing signs I really do not appreciate the incongruence school crossing signs impose on my schema. The school is not crossing the road. The children are crossing the road to get to school. This has bugged me all my adult life. I have rationalized to myself that the reason they do not have a children crossing sign or a student crossing sign is because sometimes teachers, parents or other grown ups may cross the road at the sign. Even so, to be in sync and not upset my schema of crossing signs, the correct sign in my opinion would be a pedestrian crossing sign. I understand that school zones are treated differently by law in terms of motorist speeding and fines and thus it seems logical to draw attention to the school zone with a school crossing sign, but to my visual schema this sign is just plain wrong! Do you ever see a school crossing the road by a school crossing sign? I don’t.

A sign that is even worse than the school crossing sign is the deer crossing sign. Even though deer actually do cross the road, they do not cross the road at their sign! I am sure everyone in the world will agree with me on this one. For real – who has ever seen deer, either a single one or an entire herd – line up at their sign to cross the road? It is obvious that deer cannot read. Too bad because if the deer could read perhaps we would not have to see so many of them lying by the side of the road after finding misfortune with a vehicle. Has anyone ever seen one of these deer lying next to their crossing sign? I haven’t. More evidence. Deer do not read. Deer do not cross at their sign. These signs really irritate me – and in Wisconsin where I live it seems of all the crossing signs erected deer have the most.

Something happened recently to inform me. I read a newspaper article that explained these signs. According to the Wisconsin Department of Transportation, deer crossing signs have been erected in places where there have been several deer-motorist mishaps to warn drivers of deer in the area.

Ahhh…the deer crossing signs are not for the deer! They are for the motorist. Hmmm…the snowmobilers read and cross at their sign. That has got to be helpful for them, but the sign is for the motorist. In fact, all the crossing signs are for the motorist! Thanks to my local news crossing signs now make sense to me.

And this just goes to show that no matter how old you are – autism or not – it is never too late to learn new things (Endow, 2012). Therefore, please refrain from predicting what your child with autism will never learn or will never be able to do when he grows up. The predictions made about me as an institutionalized youngster simply were not true. It took me longer to grow up than it takes most people, but I continued learning well past my school years. In fact, as an autistic woman in her late fifties I continue to learn new things and, in turn, live more comfortably in the world around me.

Painting is Morning-Chirp Sun Girl
Available in sets of 5 greeting cards
and acrylic prints in three sizes
in the Art Store 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.

Originally written for and published by Ollibean on March 6, 2014

Inclusion – How it Works Best for This Autistic

August 2, 2014Activism/Advocacy, Autism and Aging, Growing Up Autistic, Social Considerationsadmin

As an autistic, I sometimes feel boxed in by the best practice strategy of inclusion. Please don’t get me wrong – inclusive education is a very good thing! Historically, people with disabilities were not given access to public education. Then, over time, laws changed. Today we have special ed classrooms in our schools and the progressive schools practice inclusion.

Today’s Inclusive Education
Inclusion means that all the students get to learn in the general ed environment. Instruction is differentiated while physical, sensory, emotional and every other need of each student is taken into consideration so that all students learn together, each one doing and being his very best self. Inclusion allows each student to belong to the community of his peers.

My Personal Take on Inclusion
I love the idea of inclusion. It is right and good. It is very important. AND sometimes this setup doesn’t work well for me. I am not able to access my thoughts and words in real time. Even a quiet environment, with several people in the same room does not necessarily allow me access to those people or even to my own thoughts. Sometimes this sort of situation can propel me into shutdown or meltdown.

In fact, now that I have access to the typical world and experience an inclusive adult life in my community I am discovering that I don’t always want to participate in the typical world. If inclusion is good and right then why is this?

A Breadth of Inclusive Experience
As I ponder this question for myself as an autistic, I realize that the world is run according to the majority. This means a neurotypical (NT) brain is what is behind the conventional constructs of our society. Inclusion looks the way inclusion works for the NT majority. Inclusive opportunities and indeed, all of inclusive education and life, happens via NT style. It is what we have. It works for NTs and it even works for me some of the time. It allows a breadth to inclusive experiences.

A Depth of Inclusive Experience
But at other times I need to honor my autistic neurology. While I love being part of the everyday fabric of life in my community, I also need to spend time living my life with other autistics. This is where I find the depth of inclusion my heart and soul searched for my whole life. It feels like home to me. It is the place where I do not need to inhibit my natural noises, flaps and extraneous movements and moans. I do not need to be mindful of the hundreds of social rules of NT society. I am free to be my true self. My autistic friends do not judge my intelligence, my potential contribution or my human worth by my unconventional mannerisms. I belong, just as I am in my natural state, accepted and loved for my whole self – not just for my NT look-alike self.

The Breadth, the Depth and the Importance of Choice
And still, for me it is quite important to know how to get along in the world at large. I love the freedom of being able to walk in and out of any place in my community and fit in so as to appear to belong. I love being able to take my place in the world at large. I am grateful to have this choice because it hasn’t always been this way in our world.

Additionally, a different and just as valid inclusion comes from the community of my autistic friends where all of me – including autistic traits and mannerisms – are understood and cherished. This is the place where I have the most fluid access to the best of my being, likely because I do not have to inhibit my natural autistic self. To me this is a treasured wonder.

From A History of Marginalization
At the end of the day, I ponder the inclusion situation through history. Being “othered” most of my life in “special” settings never felt like inclusion to me. It felt like being shoved to out of the way places of “less than.” Then later, given only the opportunity for inclusion only NT style I was left wanting and longing for something I did not understand. It wasn’t until I had both that I felt I was no longer an alien, but truly belonged in this world.

To a Future of Comprehensive Inclusion
I believe we may come to discover in the future that to thrive and to be all that we can be, we autistics will need both the breadth of NT inclusion and the depth of autistic inclusion – two distinct and equally important styles of inclusion. As autistics, we also need to be empowered to choose how this mix best works for us in our given autistic bodies. My needs wax and wane over time, but it remains constant that to love and to be loved I need access to both inclusive environments and to be able to choose the mix that serves me best. This allows me to belong and to participate fully in the human race.

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 29, 2014

Excerpt From Paper Words: Discovering and Living with My Autism

July 17, 2014Growing Up Autistic, Social Considerations, Visual Supportsadmin

I remember with fondness my institutional social worker and some of my favorite aides who began group therapy sessions with a handful of girls on my ward. The topic was often the same – FEELINGS.

I understood feelings intellectually, knowing their labels and their definitions. I also began to realize that the way I perceived the world – through the movements and sounds of colors –

though real as real

could be

to me

was not

a reality shared

by others

and thus …

I came to understand that if I wanted one day to be discharged from this institution, it behooved me to NOT share my color realities with others. So, I didn’t.

Instead, I focused on learning all I could about feelings so that I might figure out how to match this information to my perceived experiences with my beloved colors. And yes, colors were my “beloved” because through the movements and sounds of colors I was able to make my way in the world outside of my skin. Because of my perceptions of the ways of the colors all around me and the colors generated from the interactions between people, I began to pay more attention – and thus came to a better and better understanding of the world-people world all around me. Thus, as a teen I was able to begin to very literally sort out and apply the feeling labels I carried around in my pocket to the colors of my then-current life experiences.

Today I write this because I want people to understand that actual barometer development happened in a very literal and concrete way for me. I also would like it if people could start to imagine a world perceived by the movement and sounds of colors rather than a world whose meaning is primarily obtained by the sound of words being articulated.

And while you are imagining, please entertain the notion that a person who has an internally wired neurology to enable this, though a bit different from most, may not be any less intelligent, or indeed any less of a human being, than the typically wired folks, who are clearly in “The Majority” in the world-people world.

It may not be any better or any worse …

It is just different.

(But, for real, does “different” and “minority” need to be equated with “less than”?)

And still, at this point in the story, I had not yet become acquainted with autism. Indeed, my “communicative” brand of autism had not yet become widely known in the world outside my skin.

But just because others didn’t yet know about IT

and therefore I could not be told about IT

or have any way to become acquainted with IT,

I nevertheless kept right on discovering this IT

that would one day come to be called my AUTISM

So, once again,

come along
with me

on my journey
of discovery…

of my own private
world that resides

in that inside space
of the place on

the side of
my skin that’s located on

the inside
side of me

this private world
of mine

that would
one day

come to be called

my autism …

Excerpt from Paper Words: Discovering and Living with My Autism, pp. 43-44

Note: All my thoughts are in pictures. Words are a translation of the pictures I use when thinking. The spaces between letters and words represent how long it takes for the pictures to fluidly move in such a manner as to connect smoothly with the next thought.

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.