Category Archives: Growing Up Autistic

Autistic Adults Do Not Look Like Autistic Children

I recently presented to a room full of people on the topic of Autistic People and Literacy. A few days later I again presented to another group of people on another autism related topic. It doesn’t matter the autism topic or whether the group I am presenting to be educators, therapists, or parents of children with autism – I am almost always approached by someone wanting to know how it is that I do not look or act anything like the autistic children they know.

There are many reasons autistic adults do not look like autistic children. Here are some to consider:

1. The first reason is that all children grow up. Adults, whether autistic or not, generally do not behave in their everyday lives the same way they behaved as small children. We all grow and change with maturity. Autism does not prevent a person from growing and changing over time.

2. Autism means, in part, developmental delay. When we are children this delay can be huge, making us look very different from our same-age peers. However, delay does not mean stagnant. It simply means delay. Developmentally appropriate things that cannot be done at the correct age can often be accomplished later in life. Typically, this takes a lot of support and effort, but over time that support, effort and direct instruction tends to pay off, as we grow older, being able to do many things than we couldn’t as a youngster.

3. Autism means there are communication challenges. Even so, everyone communicates, including nonspeaking autistics. Challenges are the biggest when they are the newest. Over time communication challenges can be addressed, accommodated and supported. This takes time and much effort. The result is that the communication challenges seen in a 3 year old or a 12 year old will likely not look the same when that child is 30, 50 or 70 years old.

4. I personally have not met any autistics (and I have met a lot of people from my tribe) that have not been challenged by their sensory differences. Again, the challenges are the greatest when we are youngsters because we have not yet learned how to manage our sensory system in a world that is geared for people with “typical” sensory systems. By the time we are 40 or 60 years old we are more in-the-know and can plan for meeting our own sensory needs much better than we could as youngsters.

5. Autistics want friends just like everyone else. As youngsters, most of us do not have the skills to make that happen. Also, children are grouped together according to age and due to our developmental delay we are often not social peers with same-age children. This compounds the difficulty in making friends. Early adulthood can be especially challenging as we are often socially and emotionally at a much younger age than people expect when they look at us. It is often taboo for young adults to have friends who are children, even when the young adult is the same emotional age as a 10 or 12 year old. It takes a lot of years for this to get better, but it can and does get better for a lot of autistics. Just think about it – it would be considered “inappropriate” for a 22 year old to befriend a 14 year old because of the eight-year difference, but when you are in your 30’s or 50’s nobody cares if there is an eight-year or more difference in age between friends.

These are just a few of the reasons why autistic adults do not look like autistic youngsters. In my case, there are a few more points to consider. Not only am I autistic myself, but autism is my profession. I work in the field, have written several articles and books and have made more than 300 presentations in the States and internationally. To do my work I must be diligent in my sensory regulation every day, I have mentors who I can turn to around communication struggles and other challenges, and I generally know what I need and how to ask for it should the occasion arise.

Even so, I am just as autistic as ever. I no longer live in an institution or use body slamming to communicate my needs. Over the years I have learned to work with my autism, honoring who I am in this world. Some days I am better at this than other days. I am nearing retirement now and when people approach me and are befuddled that I do not look anything like their autistic youngster these are the things I would like them to consider. Yes, autism can be difficult. I know. I live it everyday. It is my life. It is my profession. Yes, I agree – autistic adults do not look like autistic children. It is because autistics have unlimited potential.

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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 February 23, 2015

In Sidewalk Cracks: Autism and Authentic Relationships

You on your NT sidewalk square
Me, on my autistic one.

You jump to my square to help me out
Because
Heaven knows
(and so does everyone else)
That I need all the help you can give.

You teach me to copy your ways.
I learn to do so.
I jump to your square and copy you.

You are happy because I am learning
To look like you
To copy your ways in the world.

I am empty.
All I have is you helping me
And me copying your ways.
Is it a wonder the feeling of alien predominates?

There is more to jumping over the sidewalk crack.

Instead, let’s jump in it!
You from your square
And me from mine
Together jumping into the crack between

A real relationship in the making
Not you helping
Not me copying
But instead
Both together

Each ourselves
And together
Friends being!
(Endow, 2013, pg. 204)

Dear Reader,
“I have come to understand relationships by looking at sidewalks. I imagine people each on their own sidewalk square. Growing up I had many helpers. People who were helpers would jump from their own sidewalk square over to my sidewalk square. They would stand by me on my sidewalk square and help me. Eventually, I came to learn their ways.

Once I learned to copy the ways of other people I was allowed to jump over to their sidewalk square and occupy space with them. This jumping around on sidewalk squares happened in various ways for most of my life. It wasn’t very fulfilling. I often felt like an alien, other-ed, sometimes allowed and always oddly different.

Then I learned something new! I learned about jumping into the sidewalk crack with another human being. I discovered that in sidewalk cracks is the place of real relationship. It is the place where we each come as we are and it is perfectly fine. We are at home with each other in this space regardless of which version of self we bring that day. As we jump from our square into this sidewalk crack we find that together we are more than the sum of our individual parts and we find that each is necessary to the other. It is a relationship of equality based on our separate commodities of uniqueness.

I have come to learn that even though I do not measure up to be very many inches when the yardstick of NT normal used, I no longer use these very little bit of inches to define my human worth. Instead, I count all of my inches that nobody has yet found a way to measure.” (Endow, 2013, p.208)

In the process of sharing with you I have come up strong and tall. I grew tall, rising up out of the sidewalk cracks of meaningful friendships. I grew strong in the sharing with you by deciding to count the inches of my tallness that the NT yardstick cannot yet measure. I am blessed. My heart is full. I have you, the reader to thank. If you are still reading, thank you for walking this journey with me. I appreciate you!
Judy

99SidewalkCracksPainting is In Sidewalk Cracks 2
available in packs of 5 greeting cards
and 3 print sizes
under the Art Store tab 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 December 30, 2014

 

Learning to Hide the Real of Me

Autistics in my generation grew up during an era where not much was known about autism. Some of us grew up in institutions. Many of us learned that it was in our own best interest to hide our differences. This was a time before anyone even knew the label for those differences was autism.

Time marched on and much has become known in the field of autism. Today there are groups of teens and young adults who are free to proclaim they are “autistic and proud.” Please remember there were generations of autistics who have gone before you, paving the way so the concept of autistic pride could even be conceived and then born.

Today, those in your generation will live your lives and when you are approaching retirement your story will likely not match the story of the younger generations of autistics. This is right and good as advances in understanding and attitude mature over time. We are what we are today, in part, is because of those who were what they were yesterday.

Here is an excerpt from my story taken from my book Paper Words: Discovering and Living with My Autism (Endow, 2009) ~ sharing a story from the yester-years of autistic history.

“As a teen confined to a state mental institution I was extremely quiet. In fact, I went for a long time without talking at all. It wasn’t that I couldn’t talk; I simply didn’t. I was diagnosed with depression by the psychiatrist.

My family talked about my “nervous breakdown,” which led me to believe that the nerves inside my body had quite literally broken down – similar to the way a car breaks down. When a car begins breaking down, it still runs but just doesn’t perform correctly. When a car has a complete breakdown, it stops running altogether and doesn’t perform at all. Therefore, using this broken down car analogy, my logical assumption was that my nerves must have been starting to break down when I had been hospitalized on the psych ward near my hometown. Now that I was at the faraway state institution, it made sense that this meant that the nerves in my body had somehow completely broken down; thus the term “nervous breakdown.” I was very thankful that there was no physical pain involved when my nerves broke down. Indeed, I had never felt a thing and wouldn’t even be able to tell you which day, never mind the precise moment, when my “nervous breakdown” occurred.

Furthermore, I assumed that since my nerves had broken down, it would be expected, and therefore perfectly fine, that I stopped talking. Besides being a great relief not to have to perform all the internal mechanical tasks that go along with us­ing speaking words, it led to quite a functional strategy for me! Rather than using up much of my daily energies on all that speaking entailed, I could instead use my energies to look inside myself in search of the broken nerves. It seemed logical that the place of the break would need to be discovered and reported before the hospital workers could set about fixing this break.

Most of the time my inner being looked like a jumbled muddle, but once I spent a few months without talking, the muddle started untangling itself. The more the muddle untangled, the better I was able to see my internal wiring. I thought I was looking at my broken nerves and that it was important to record and report my findings to my doctor. I imagined that he would use my information to somehow help mend my broken nerves. So I did my part – now recorded as the first chapter of this book – much of the chapter you just finished reading. Unfortunately, the doctor never did his part, at least the part that I had imagined he would do.

It took me a long time to figure out that nobody at the institution was inter­ested in my personal discoveries about how my nerves were wired inside my body. Initially, my belief had been that if the doctor read what I wrote, he would have the information necessary to fix up my broken nerves. I further believed that as soon as he became privy to the information, he would get right to fixing me up.

Because I was so sure of this, and because he wasn’t at all interested in read­ing what I wrote, I began speaking again just so I could tell him of my discoveries. I knew spoken words were his preferred mode of receiving information and thought I had important information and should accommodate him. For several months, I tried my best to get him to understand, even though I was only granted fifteen minutes of his time once or twice each month.

Looking back, I am certain that this is the point when it was decided that I was delusional and having hallucinations. I had been insisting that I could see the nerves inside my body. I repeatedly told every staff member I could get to listen how my internal wiring, along with its hookups, looked inside of me. None of the staff on my ward seemed to want to hear about my phenomenal discovery, even though I tried to tell each and every one of them many, many times.

When I finally got to tell the doctor about it, he hardly listened. Initially, I thought he didn’t want to know about my discovery. Then, when his only comment was that he wanted me to take a new pill, I figured that he didn’t need to know from me about my discovery because the ward staff had already reported my findings to him. That made sense, especially since I knew that my discovery of how my nerves were wired inside my body was breakthrough information, undoubtedly helpful to the doctor in remedying my “nervous breakdown.”

I was excited about getting a pill that would mend the breaks in my nerves and expressed this to the med nurse. She informed me that the pill was to stop my hallucinations.

The pills turned out to be awful. At first I lost the ability to tell where my body was in relationship to everything else in the room. Then, I began feeling as if I was physically melting into my surroundings, becoming part of the air around me rather than the separate physical entity of a human being. Finally, after a few days, I lost track of my very being. I didn’t catch up with myself until several months later when they stopped having me take the pills. Once my use of the pills had been tapered and stopped, I realized that three whole months of my life had escaped me.

This harrowing experience made me understand that to survive the institution, I would need to change my strategy. I needed to NOT write or talk about the broken nerves inside my body. Even though I was certain this information was vitally impor­tant, it seemed even more important by then to keep it a secret. So I did. I never again tried to write or talk about the way the wiring of the nerves in my body looked to me. I had learned my lesson; this talk would be equated with hallucinations, and consequently I would be medicated. Never again did I go back to those thoughts until the writing of this book.

Today I can appreciate that back then I was describing the neurology of my own autism, but back then there was no autism label available for the doctor to ap­ply to somebody like me, who was able to talk. It was a piece of science not yet discovered. I believe my doctors did the best they could within the framework of the diagnostic choices available to them in the mid 1960s.

So even though I figured out NOT to talk about my internal wiring, so as to avoid heavy-duty psych meds, I remained of the opinion that this was important information. I started realizing that if I were to ever get out of the institution, I would need to “act normal,” whatever that meant.

In practical terms, I thought that if I could pinpoint the ways in which I was dif­ferent from the other teenage girls on my ward, I could learn to hide my differences. I was convinced this new strategy would be my discharge ticket.

It came to pass that my assumption was correct. I discovered several ways in which I was different from other teenage girls on my ward and then learned how to hide those differences. Lucky for me, I eventually got discharged!” (2009, pp. 68-69).

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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.

Sun Waves: A Sensory Aspect of My Autism

“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).

original

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.

Supporting Autistic Relationships

As an autistic my connections to other people are perceived visually. In fact, I often need to have a concrete visual available in order to be able to think about my friends. A challenge I am often faced with is the erroneous presumption and resulting behavior of neuro-majority people when I need a visual in order to maintain a relationship.

Many Autistics Are Visual Thinkers
For those of us who are visual thinkers it seems logical that visuals would play an important part in developing relationships with others and in maintaining those relationships over time. In fact, many of us need something we can actually see such as a picture of a person or a concrete object representing that person.  We do not decide to need this, but rather it is the way our autistic neurology makes information available and connections possible for us.

My Experience Growing Up
As for myself, I need a visual in order to think about a person or to pull up a conversation I had with a person.  When I was a child I would sneak something of mom’s to take with me to school such as a discarded Doublemint gum wrapper. If I didn’t have some sort of visual reminder of mom with me it caused me to feel as if she did not exist – like she had died. When this happened it was hard to concentrate and figure out what my teachers wanted me to do.

My Challenges As an Autistic Adult
It seems to be difficult to get neuro-majority folks to understand this phenomenon, but when it occurs it is as if the out of site person is no longer alive. I need a visual placeholder in order to maintain my connection with another person. Often times when I am brave enough to make this need known I have been laughed at or in some other way ridiculed. It is thought to be babyish and I have been admonished to “grow up.”

I do not understand this reaction of others, but have experienced it many times over the years. It is not at all helpful. It does not honor my neurology and it does not allow me to participate in relationships. It seems to be difficult for neuro-majority folks to imagine relationship connections to be any way other than the way that works for them – which does not typically include a picture or object reminder of a friend in order to maintain the bond of connection.

Solutions

  • It is helpful to work with this neurology by providing a picture of an important person, such as a parent, for a child anxious over a pending separation. In my practice many a grieving student has been helped during the beginning of the school year by having a small photo of a parent taped inside his cubby, desk, locker or on the back page of an assignment notebook. Anxiety is reduced and learning ensues when a student is not grieving.
    `
  • Some autistics can learn to draw or write something that can serve as a placeholder for an out-of-site person.

An example from my own life ~ a poem & acrylic painting

Connections

Connections

Out of sight
Means
Out of mind

Unless

A
Picture
I
Create

Before
I
Knew
To
Do
This

A
Friend

I
Had no way
To
Keep

  • If you are of the neuro-majority please don’t poke fun, tease or shame an autistic for having a need imposed by his neurology. Besides being mean, it is not helpful and does not support relationship development.
  • If you are an autistic don’t belittle or put yourself down for a fact of your neurology. If you need something to serve as a visible placeholder for a person who is out of site and want to explain this to another person feel free to print off and use this blog as an explanation.

Conclusion
“Regardless of how or where I get my visual, the fact remains I need some sort of visual in order to experience the fact that I am connected to another person through the bond of friendship. This doesn’t make sense to most people, but I have learned not to let that bother me these days! I do what makes sense to my neurology to maintain and participate in friendships. My closest friends tend to be people who do not question this peculiarity but instead join with me in honoring it.” (Endow, 2013)

Connections is the tittle of the acrylic painting by Judy Endow. 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.

Originally written for and published by Ollibean on August 17, 2014