Tag Archives: autistic

Autism, Direct Instruction and Having Friends

October 2, 2016Autistic "Behavior", Communication, Growing Up Autistic, Hidden Curriculum, Social Considerations, Visual Supportsaccommodation, autism, autistic, friendship, hidden curriculum, neurodiversity, neurology, socialadmin

Social understanding and communication are two areas impacted by autism neurology. The way this plays out is different from one autistic individual to the next. Typically, for autistics I have worked with, this means that they do not always pick up social information from the world around them through observation only as most people do. Instead, they sometimes need direct instruction concerning information their autistic neurology doesn’t allow them to automatically pick up and learn.

I think it is important that those around autistics understand that not having typical social understanding of same age peers is part of what autism means. Many times I have seen well meaning adults blame autistics for behavior that is a result of their brain not picking up and synthesizing social aspects of many things in the way people with typical brains do. It is common for adults to think that since the autistic is smart he should know better and that he is choosing to behave rudely. This misattribution has so many negative and far reaching consequences for everyone involved.

In general, it seems that people looking at an autistic really cannot see the autism. This means it is difficult for most people to know what behaviors are reflective of the underlying autism. If a person has a broken arm we can see the cast and understand the person will not be able to use his arm as typically expected. If an autistic person does not have the social understanding of how to act when losing a game we may see him act as a sore loser. We do not see the differently connected neurological pathways that feed information from a variety of brain areas in a split second that are not connected in the usual manner and therefore cannot be used to pull up good loser behavior. That is, we cannot see the autism at play – we can only see the sore loser behavior.

To help in seeing the autism when it comes to areas of unexpected behavior due to atypical social understanding that is part of the basis of an autism diagnosis, here is an example of direct teaching that took place over several months for a 12-year-old boy to learn the skills involved in being a good loser. Learning these skills allowed him to play games with others his age – something he very much wanted to do.

Example of Direct Teaching on How to Be a Good Loser:

Rodney could only play games if he could be assured ahead of time he would win. He would actually say, “I will only play if you let me win.” Rodney very much wanted to play video games and board games with others and even though he had above average intelligence, couldn’t grasp why other 12 year olds didn’t want to play with him.

Social Story: I wrote a social story as a way to give Rodney the social information around winning and losing when playing a game.

Cartooning: Additionally, each time Rodney had played a game he would relay the information and I would draw it out in cartooning style with the talk bubbles. Once the sequence of events were drawn out we would go back over it and fill in thought bubbles. Rodney was often miffed as to the thoughts and feelings of others. He would sometimes take the cartoon home so he could ask his parents if I had the thought bubbles “right.”

Modeling: Additionally, each time I saw Rodney we played UNO and he won. I was very demonstrative in portraying good loser behavior along with identifying it as good loser behavior.

Visual Support: We even started a chart called How to Be a Good Loser and took turns writing down my good loser behavior.

Video Technology: Then, we would watch a You Tube clip that showed kids playing games, particularly watching for good loser behavior. Eventually we watched both good and bad loser behavior of kids playing games and Rodney became quite good at sorting out which behavior was good and which was not good.

Visual Response Prediction Rating Scale: Because Rodney was fond of science and experiments; we made a loser behavior rating scale where we decided, based on the loser behavior whether he would be invited to play another game with his opponent. Here is a snippet from that scale.

Likelihood of Being Invited to Play Again

Loser Behavior	Invited to Play Again	Maybe Invited to Play Again	Not Invited to Play Again
“Good game”	X
“I hate you” and throws game pieces			X
“I hope I win next time” and kicking the board game		X
Quitting when it looks like you may lose			X
“Let’s have a rematch!” said with a voice expecting it to be a fun gam	X

Play Acting Desired Behavior: Next, Rodney practiced the good loser behaviors as if he were an actor in a play. I wrote a script where the characters, Jack and Jane played UNO with Jack winning the first game and Jane winning the second game. Each character exhibited good loser behavior when they lost. Rodney could do this play-acting, but he would always inform me, “This isn’t a real game. It is reading script.”

Video Technology: Then, we made our own video clips on Rodney’s iPad with him playing the character Jack being a good loser. We watched these video clips many times. It allowed Rodney to solidify the picture of himself using good loser behavior.

Predictability: Finally, I told Rodney that I would let him win game 1, 3 and 5 of UNO, but game 2 and 4 I would play my best and this meant that sometimes he might win and sometimes I might win.

Video Technology/Vicarious Behavior Rehearsing/Priming: Right before game 2 and 4 we would take a break to look at our Jack video clips.

Predictability: Whenever it looked like I was close to winning I would announce it so as to prepare Rodney, though he was keeping track pretty accurately.

Non-Verbal Prompting: The first time I was near winning Rodney announced he no longer wanted to play UNO. I pointed to our chart so he could be reminded of where that reaction was likely to lead. I started watching one of his video clips. He didn’t want to watch it, but because I was watching it he heard himself portraying his good loser behavior.

Allowing Extra Time for Processing During Difficult Moment: I told him to let me know when he was ready to finish the game. He took the iPad and watched the video clip and then said he was ready. It was really hard for him that first time he lost, but he was able to pull up the desired behavior.

Repetition and Practice: Eventually, with more practice, Rodney was able to pull up the good loser behaviors. In the beginning he needed to know before starting the game whether I was going to let him win or not. Eventually, we both played our best, neither one knowing who would win until we came to the end of the game.

Desired Outcome Achieved: Ultimately, Rodney was able to play games with others, which is what he so much wanted to do. One day he greeted me with an impish smile on his face and shyly said Darius had invited him to a sleepover on the weekend so they could play video games. He said, “I hope I win, but if I don’t I’ll be a good loser. I have to because mom says if it goes well I can invite Darius for a sleepover at my house next time.”

In retrospect, I could have added in a reinforcement system when Rodney started losing for real. We often reward ourselves when we do hard things well. Setting this up for Rodney likely would have helped him master the skill sooner. It would have also opened the way for us to talk about how he might chose to reward himself in the future when he does something well that was difficult for him to do in the moment. For example, if he loses graciously while playing a game with a friend, he might get 15 minutes extra of screen time (negotiated ahead of time with his parents). This would be similar to me deciding that on work mornings where I start with several hours of email to answer I will have a bagel with my coffee! We all set up self-reinforcement. Some of us do this without thinking much about it and others need to be directly taught to do this. It is simply another one of those life long skill that can be directly taught!

It is also noteworthy that many autistics need some sensory modifications to the environment, breaks to regulate their sensory system, instruction on how to play the game and other supports particular to the way autism presents in them. I have used Rodney’s example because it required many different support strategies over a long period of time for him to experience his desired outcome of having friends play games with him. Others I have worked with required both less and more in the areas of support strategies and time to learn new skills. While we can all learn from Rodney’s example and find many useful strategies, how support is given to another person needing to learn a similar skill will work best when it is individualized to the needs of that person.

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.

Autism and Public Perception

October 13, 2015Activism/Advocacy, Social Considerationsautism, autistic, autistic experience, employment, neurology, transitionadmin

Today we have added something to our public perception of autism. Historically that perception has been one of an isolated small child rocking or head banging, oblivious to the rest of the world. Even though that perception is wrong, it is the public perception. There is an addition to that perception in the past few years. It seems society has added an adult image of autism. It is another false image, but never-the-less, quickly becoming an accepted public image of what it means to be an adult autistic. Unfortunately for all of society, that image is of a shooter. Not any shooter, but a mass shooter.

With each mass shooting tragedy, an interesting phenomenon occurs. If the shooter is a person of color we label the event as an act of terrorism. If the shooter is white we pull out the mental health or autism angle.

Most of the mass shootings in the USA have been by young adult white males. Early on in the reporting, when the nation is glued to the news story, autism is questioned. It seems to be the new favorite buzzword of news reporter’s sense making of mass shootings by young adult white males.

The fact of the matter is that of the almost 50 mass shootings in the USA in recent times almost none of the shooters were autistic. Even so, the public perception that shooters are autistic has been developed. The way this happens is that early on, when we are all paying attention to the news on the newest mass shooting tragedy, the autism question is raised. Then, several days later, when most of us are no longer closely following the story, the fact that the shooter was not autistic surfaces.

Because autism was connected early on in the reporting of shootings, it sticks in the minds of the general public. Even though it is not true it has now become pseudo public knowledge and therefore a generally held societal belief that mass shooters are autistic.

I realized the public image of adult autistics as mass shooters has taken hold because of the following things that have happened recently in my life:

In two separate school consultations in the past 6 months school staff have expressed concern that their particular student would become a shooter. One student was a fourth grader who had a behavior of dropping to the floor while screaming and crying. The other student was a seventh grader who pushed his books off his desk and yelled, “no” in response to becoming overwhelmed. I have been an autism consultant in schools for many years. These behaviors are typical results of disregulation in students with autism. When sensory diets and visual supports are put in place the behavior typically subsides. Never before in all the years I have consulted have school staff voiced concern that students with these sorts of behaviors might become a mass shooter.
I was told by an acquaintance that I could become the next mass shooter because I am autistic. This person went on to tell me that everybody knows autistic people do not have empathy and therefore have no feelings for others. I was told that it is impossible for me (or any autistic) to be a caring or compassionate person and therefore I could be the next mass shooter. This belief is wrong. The facts are autistics do have empathy and do have all the same feelings other people have. Most of the time autistics experience feelings so intensely it causes an emotional shut down. Unfortunately, when John Q. Public holds an erroneous image of adult autistics as shooters, all the facts in the world do not change his belief that he now considers factual.
An autistic acquaintance reported her eight-year-old autistic son woke her up in the wee hours of the morning very upset and crying. He expressed fear that he would shoot people when he grew up because he was autistic.
A Facebook hate page popped up called Families Against Autistic Shooters. Petitions were signed more than once in attempts to get Facebook to remove the page. Once it was removed it took but a few hours before it was again up and running. Here is a link to a story about this https://www.yahoo.com/health/internet-rallies-to-remove-facebook-page-linking-013122755.html

It seems our society has adopted yet another false belief around autism. I am quite concerned over how this might play out. We are living in a time when we are in need of putting together increasing numbers of transition programs that include housing for our young adults needing that sort of support. What will this mean in terms of employment and housing opportunities for our young adults on the spectrum?

Even though this has untold impact on autistic people themselves, it is a larger societal issue. As there become more and more supposed reasons to shove autistic people out of their rightful place in society please know that this sort of set up, if allowed to continue, will short change all of society. Autistics may need supports to live in this world AND autistics have contributed mightily to our modern society. We would not be using many modern inventions, electronics, medical advances, and technology if it were not for the contribution of autistic people over history. Society cannot afford to squelch the contributions of autistics alive today or of those who will be born in the future. To do so would be like cutting off our nose to spite our face.

Therefore, I encourage all people who fashion themselves to reasonably intelligent not to swallow hook, line and sinker, the assumption that shooters are autistic. It is false and it will only lead to you developing an unfounded fear. Whenever fear of an already marginalized group occurs history has shown that the results are horrific. Please do not be part of society going there. You can inform yourself.

If you want to read about the history so as not to repeat it check out Neurotribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman.

If you want to get a true picture of what autistic people are like and you have an aversion to finding out from actually autistic people, please read Uniquely Human: A Different Way of Seeing Autism by Barry Prizant.

Both books were released late summer of this year.

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 October 12, 2015
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Autism and Processing Social Information

July 31, 2015Activism/Advocacy, Autism and Aging, Autistic "Behavior", Communication, Hidden Curriculum, Social Considerationsart, autism, autistic, autistic experience, Diversity, employment, first person account, movement, neurology, sensory, speech, transitionadmin

My autistic neurology means that I am not good at picking up typical social cues, understanding complex social situations, automatically picking up meanings of idioms, or understanding the hidden curriculum that most others automatically pick up (Endow 2012). This means I often look naïve and gullible. The fact is I AM naïve and gullible when I try to use the social constructs of neuromajority folks to navigate the world around me.

When I was younger and deemed “in need of help” that “help” largely involved others trying to teach me to think and act as if I had a typically wired brain. I was never very good at it because no matter how many therapeutic social skills situations I availed myself of, because they were taught as if all participants had a neurotypical brain and my brain was not neurotypical, I mostly failed their learning agenda for me. My brain just plain works differently.

Here is an example: I rarely remember the same details about other people that most folks do. I remember the visual perception that came to me during an interaction, whether or not I was personally a part of that interaction. I pick up much information through seeing the sounds and movements of color people generate along with changes in the air space surrounding them as they speak and go about their business.

When I match the colors of others I can carry on a conversation. When our colors don’t match, the conversation usually doesn’t go well. I did not realize this way of perceiving and understanding the essence of people was not shared by others until recent years (Endow, 2013).

All through my life when others have tried to help me it has been minimally helpful to me. They would most often try to get me to understand the world in the way they understand the world. It was helpful information to know how others were thinking because it explained their behavior. Even so, learning how typical people think does not help me to then be able to think in their way.

Now that you have read the above example of one way I think visually by incorporating the sound and movement of colors people generate do you understand it? Probably so. And now that you understand how I think can you stop thinking the way you think and start thinking the way I think? Probably not!

The way we think is important because it is how we make decisions. It is part of everyday life. In my work life I might avoid business interactions with someone because they have ugly colors with sticky tentacles moving sneakily toward me. A typical person, who’s thinking is language-based, may understand that this potential business partner is devious and less than ethical in his practices. In essence, we both understood the same thing, but I had no way to explain it unless I translated my visual thinking into words. Visual is my native language; it is how I interface with the world around me and how I innately understand people.

Just like it would not be helpful for you to adopt my ways which are foreign to you, please understand that it is not helpful for me to always adopt your foreign ways when making decisions about people. We think differently and that is okay with me. I look forward to the day that my way of thinking is okay with the rest of the world.

In the meantime, if you are a parent of an autistic child, perhaps you might find it useful to ponder these questions:

Do you know how your autistic child remembers people?
Do you know what is important to your autistic child about other people?
Do you understand how your autistic child decides who to interact with and who not to interact with?
Do you honor this, even if you may not understand it? Many autistic children will not be able to explain to you how they think because it is not word based. You do not necessarily need to understand how your child thinks in order to honor it.

Note: Here is my first attempt to translate my visual thinking on the essence of people. After I translated my visual thinking into this sketchy language I was then able to go the next step to make a paragraph of words (which is the indented paragraph above that starts with “Here is an example”}. This is how my visual thinking gets translated to words. Once translated to words I can then speak the words. Today I can do this three-part translation

visual thought,
sketchy words,
paragraph words

to be able to speak my thought. I didn’t know until recently that most people do not need to do a three-step translation before speaking their thoughts. Most of the time these days, after decades of practice, my speaking appears quite fluid, though sometimes a delay is still apparent. It is often hard to translate because the world of English words is much more limited than my visual thought. It is like being confined to a limited choice board when what I really want isn’t an available choice.

The Essence of People

Melodious sounds
From your
Colors

Are music
To my ears

Or not

The patterns
Of swirls
Of the colors
Of you
Emanate
From your being

When matches
I make
I can
Conversate

We connect

My soul
With yours
Beyond words

But if not
Then
I can’t

Leaving
You to be you
And
Me to be me

Each
In
The essence
Of
Our
Being

(Endow, 2013)

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 July 30, 2015.
To comment on this blog click here.

Using Autistic Strengths to Make Friendships Work

July 15, 2015Autism and Aging, Hidden Curriculumart, autism, autistic, autistic experience, Diversity, first person account, neurologyadmin

I am an intelligent autistic woman. I manage my own business, have raised three great kids and interface with the world around me with a fair amount of success. Not too shabby considering I lived in an institution as a kid, was homeless as an adult and used public assistance for some years.

Today I am content in my life. It is intentional. I have decided not only to be content, but how to intentionally let go of some things that used to bother me. I hope to get better with this over time because it is great feeling content most of the time and I would only like more of this good thing in my life!

Last week I was at a get together with a few of my closest friends. I think it is fair to say all of us in the group adore one another. None of us would ever intentionally say anything hurtful to any of the others. I know this without needing to wonder or question it. These particular friends would go to bat for me if I needed it. They are people I can count on.

Even though we have strong bonds of reliable friendship and even though these friends understand autism better than most people I know they do not share my autism neurology. Thus, just like I see the world through my lens of autism, they see the world through their lens of neurotypicality. This isn’t good or bad. It just is. We all see the world through our own perspective.

In this group of friends I told the story about a Facebook post from last winter. Just looked up this post and here is a screen shot of it.

Initially I had just posted the first line. Within a few minutes I received a phone call about my post. Once I explained I was told I had better put the explanation on Facebook because “Can’t screw worth a darn and then the rubber broke” has a totally different meaning for most folks. As soon as I heard this I immediately knew that different meaning! I hurried to Facebook, deleted my original post and then reposted with the meaning attached. And that is why last week, when Facebook came up in conversation, I told my friends about that Facebook posting – it was funny!

After hearing the story one of my dear friends said that everybody knew I was smart enough to have understood what those words meant when I posted them. In the moment, it felt awful to know my friend didn’t believe me and, like usual when a too-big emotion is triggered, I shut down and did not have any words. It took a week for me to be able to share that I really did have only the literal meaning of the words when I first posted. And yes, once reminded, I did know the social meaning.

Understanding social meaning has nothing to do with level of intelligence (Myles, Endow & Mayfield, 2013). It has to do with how my autistic brain works. Literal is my first language. My brain automatically does business in the literal mode. I must translate into social meaning because my brain does not automatically pick up the alternative (to literal) social meaning. In fact, I developed a strategy called Pause and Match around this and if you are interested you can read about it in Learning the Hidden Curriculum: The Odyssey of One Autistic Adult (Endow, 2012). I don’t always take the time to translate simply because I don’t always know which words are in need of translation.

It turns out everyone else has a shared social meaning for “can’t screw worth a darn and then the rubber broke” and it was nothing like my literal meaning! Once I am aware of the social meaning I can laugh at the funny picture people made when they interpreted my literal remark with a social meaning. And that is why I was telling this story – the literal/social play on words made it funny.

At this point in my life I am able to inhibit most mannerisms of autism when in public. People tell me I no longer look autistic. Even so, I am autistic. I have an autistic brain. It is hard to hide my true self all the time, but doing so has given me opportunities. One unintended effect is that people sometimes make assumptions about me when I make social errors, assuming intentionality (and sometimes rudeness) because after all, they think I am smart enough to know better (Endow, 2013).

When this happens I try to remind myself that just as I see the world through my autistic neurology so do my non-autistic friends see the world through their own non-autistic neurology. If my hurt feeling was caused by no ill intent on their part I determine to let it go. Just like people cut me some slack, I can cut my friends some slack.

Sometimes, at a later time, I might bring up the situation and explain the whole idea that intelligence has nothing to do with social understanding because I believe it is important for people to understand this concept. I especially do this if I experience a reoccurring hurt feeling over the incident. Because my emotions are often huge I can have a difficult time reigning in a too-big emotion, even if I cognitively understand that the situation wasn’t as huge as the ongoing recurring emotion – again nothing to do with intelligence, but in this case everything to do with my autistic difficulty in emotional regulation.

One thing that helps me is to think of something positive and meaningful that I admire about the particular person. I get something to concretely represent the positive connection I had with this friend during our time together when the too-big negative emotion was triggered. Sometimes I get an actual object. Other times I create a piece of art. For me this concrete art object solidifies the positive connection, making it bigger than the negative hurt feeling.

Then, each time the hurt feeling surfaces I look at the art work or object – either in real time or in my mind if I am not home to actually see it. Seeing a concrete object of positive relationship representation each time my brain replays the hurt feeling, after several instances, allows the positive feeling attached to the concrete object to become larger than the negative feeling that is not attached to something concrete. It is one way I have found to work with my autistic literalness in a positive way that serves me!

Once the hurt feeling has diminished I sometimes give the object or the art to my friend. This means that I no longer need it. Sometimes I explain my hurt feeling and how it is no longer there. Other times I do not. The giving of the object helps solidify the feelings of positive regard and caring I have towards my friend.

All in all, friendships are wonderful. Autistics want and can have friends. I have found it helpful to work with my autistic neurology rather than to try to make friendships work for me in a neurotypical way – the way that most social skills and friendship groups are taught.

I have learned over time that it is a plus to be able to use the strengths of my neurology to handle the huge negative feelings that get triggered in friendships only because we view the world differently – each of us having the point of view delivered to us through the lens of our own neurology. We all have to find our way in making friendships work. Good friends are important. We all want and need meaningful relationships. And in this way I am more like the rest of humanity than my autism can ever make me different!

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 July 13, 2015.

Autistic Burnout

July 7, 2015Activism/Advocacy, Autism and Agingautism, autistic, autistic experience, Diversity, employment, first person account, movement, neurology, sensory, speech, transitionadmin

Each individual who has an autism spectrum diagnosis got that diagnosis based on deficits. That isn’t good or bad, but rather, simply the way diagnosing works. Diagnostic deficits are based on the social and expected norms exhibited by the majority of people. Deficits are determined by a significant deviation from this majority norm. And, if you deviate far enough from the norm you get a label. If you have a group of deficits that line up with the autism spectrum disorder label then you get that label.

Once an individual has the autism label, we begin teaching skills to overcome the deficits. This is based on a societal assumption that it is important for all human beings to look like the majority of human beings. We call this look “normal.” It is expected that every human being look as close to normal as possible. It is further expected that all people who don’t look or act normal very much want to look or act normal. Hence, with this mindset, it makes sense to teach skills to overcome diagnostic deficits.

I have nothing against learning new skills that allow me to look like the majority of the people on the planet even though I am autistic. I like being able to converse in an expected manner and to inhibit all my autistic noises so as to keep earning an income. Even though this means I must have considerable down time to stabilize my sensory system every day, I still love being able to make this choice. I consider myself lucky to be able to do so because for most of my life my sensory system wasn’t organized enough to even allow this sort of choice.

However, there is an unintended negative affect that learning new skills is visiting upon me. It seems that a few skills allowed me better abilities to navigate in the world. Then, because I thought if a little bit is good even more would be better, I deliberately set out to learn more. In fact, I learned how to pass in the world as a typical person – to appear as if I am not autistic.

This was wonderful for a while because it allowed me to increase my standard of living. It allowed me to move from Section 8 Rental Assistance unit to a small home of my own. Once my children were grown up, with a new family size of one, I rose above poverty level income.

Then, life got harder each day because of the effort needed to pull off the passing in order to maintain. But, it was also wonderful to not have to constantly worry at the grocery store. It is hard to grocery shop when you live in poverty because generally the more healthy the food the more it costs. It means you can have a few healthy things, but not enough to really have an overall healthy diet. I enjoy eating healthy

But here is the rub – even though I now look “normal” even though I am autistic, it is too exhausting to maintain. I am noticing across my life that whenever I learned a new skill, the bar was set higher and I was, from that point forward, expected to always have that skill available and to use it even if using the skill depleted ongoing large amounts of personal resources.

In my life, because I have been able to learn new skills with the result of looking more neurotypical, I have dug a hole for myself that I cannot now get out of as the bar of expectation for me to look/act “normal” has been raised. I am currently passing in public so well that people often can no longer tell by looking that I am autistic.

I know in the field of autism we have made it our goal to get autistics to look neurotypical as we hold that as the prized norm. Many people congratulate themselves when it happens. I am here to tell you (just as countless others from my tribe have done) that this may NOT wind up to be a good thing for autistic people.

We initially think it to be good because it opens more doors and allows more access to do/be what we want in life. Unfortunately, the unintended negative affect is that it raises the bar for us in all areas that are hard – the areas that got us our autism diagnosis in the first place (communication, social, sensory). Once we appear “normal” we are expected to always appear normal. To do so comes at a great expense. Ultimately, for me, passing as “normal” means that I am now a fake person, never able to be myself without putting my ability to make a living in jeopardy. Because I am close to retirement age I am hoping I will make it.

I am writing about this because I hope people will become aware that what we are currently patting ourselves on the back for accomplishing in the field of autism – making autistics look indistinguishable from their peers – turns out to not be altogether good. We need to do better. Let’s stop patting our own backs and start listening to autistics. The lived experience matters.