Tag Archives: autistic experience

Autistic Neurology and Behavior

Autistic "Behavior", , , , , ,

Autistic people use behavior just like people who are not autistic. Basically, when a problem is encountered, people behave in a way so as to fix the problem. We all do this, whether we are autistic or lack autism! However, we live in a majority-is-the-norm society. This means that the behavior most individuals employ to solve day-to-day problems is considered the norm. We call their behaviors solutions.

Just like everybody else, when autistics come up against a problem, we employ a solution to remedy that problem. Our behavior, even though it is a solution, it is called “a behavior” meaning it is bad behavior. This is how it often works out that those around us want to fix what they have defined as the “problem behavior.”

This is one reason I have never ending employment as an autism consultant to school districts. It is my job to sort this out for staff in a way that makes sense and helps them move beyond the difficulties they experience with autistic students. I find once teachers understand autism neurology they are able to join with their students finding viable alternatives that work in the classroom environment. Here is a familiar example I run into quite often:

Scenario as Reported by Teacher: “My student with autism simply refuses to do any school work. Every time I request he do some work he simply says, “no” and won’t do it. When I persist, encouraging him to try, he just gets up and runs out of the room. If I try to stop him from leaving he hits me, screams and throws things, often destroying the room. What should I do?”

Understand the Underlying Autism Neurology:

  1. Teacher: “My student with autism simply refuses to do any school work. Every time I request he do some work he simply says, “no” and won’t do it.”Underlying Autism Neurology: Often “no” or “I don’t know” is a default response when the autistic neurology experiences a surprise. A neurological surprise is anything unanticipated in the moment. An autistic neurology is a completely different operating system than a typical neurology. Therefore, when a teacher shows up at the side of the student’s desk with work, even though it would not be surprising to most students, it hits the autistic neurology as a surprise. This is a neurological event and as such, not a choice for the student. This isn’t a won’t (as in “I will not do what you ask”), but a can’t – the neurology cannot access anything but unexpected surprise mode. In this mode, most autistic students develop a canned response and often times we hear “no,” “I don’t know,” or some other such phrase. These phrases are solutions because they serve to make the unexpected surprise go away. It isn’t about refusing school work. It is about managing a neurological surprise as expediently as possible to prevent it from getting out of hand.
  2. Teacher: “When I persist, encouraging him to try, he just gets up and runs out of the room.”Underlying Autism Neurology: When the autistic neurology is presented with an unexpected surprise, saying “no” or some other phrase allows shut down so as to protect one self from this neurologic surprise. If shut down is challenged the neurology is forced further along into survival mode – meaning flight or fight. Reasoning is not involved. Flight or fight is an autonomic nervous system response. This particular student’s automatic survival response was flight so he left the room in response to perceived threat. It does not matter that the teacher presenting schoolwork was not an actual threat, but that the autistic neurology often automatically codes unexpected surprises as threats to the system.
  3. Teacher: “If I try to stop him from leaving he hits me, screams and throws things, often destroying the room.”Underlying Autism Neurology: This student’s autism neurology was hit with an unexpected surprise that forced him into shutdown. When shutdown was “challenged” the autonomic nervous system survival mode was further triggered into flight. When flight was prevented the autonomic nervous system engaged in the only remaining survival mechanism – fight. When engaged in this sort of response the autonomic nervous system triggers body physiology to be extremely strong and capable of putting on the fight of one’s life because survival depends upon it.

Solution Based on Autism Neurology: The solution for this school team was two-fold. First, until the presenting difficulty of doing schoolwork is remedied, this student will be given a way to leave the room when he needs to leave so that we do not trigger a survival fight. Because this student loves maps, a story about following the map when needing to leave the room was presented with the map embedded right in the story. I suggested pairing leaving the room practice with the story as many times as needed. After all, we want him to leave and go to the designated safe spot rather than triggering a survival fight.

Then, we needed to get the student on the road to doing schoolwork. The team had been quite stuck in trying to solve the stated problem of refusing to do work and, if pressed, leaving or trashing the room to avoid doing schoolwork. Now the team shifted from managing oppositional defiant behavior of refusal and avoidance to solving for autism neurology. It was so much easier to solve for unexpected surprise and unclear expectations as evidenced by the list of supports they brainstormed! (This list includes using interactive visual schedule, priming, use of visual timer, and using reinforcement.)

Conclusion: It makes sense that when you see behavior in others you assign meaning according to what it would mean were you engaged in that behavior. This strategy serves most teachers well as they share the same underlying neurology as most of their students. However, when working with autistic people remember the neurology imposes a different operating system. Strive to understand it. The more you understand the less often you will become stuck. Besides being kind and being the right thing to do, it is far more expedient to support autistic neurology than it is to assume negative character and ill intentions about your student with autism when he is struggling.

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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 November 30, 2016.
Click here to comment.

Autism, Hidden Curriculum and Making Friends

Autistic "Behavior", Communication, Hidden Curriculum, , , , , , , ,

It can be difficult for some autistic people to sort out what things are okay to say and what things are not okay to say in various social situations. This was true for a high school student I worked with during the past year. William very much enjoyed talking with others, but was asking questions and making comments that were not appreciated by teaching staff. Worse, these comments and questions were causing other students to avoid him rather than include him in social exchanges. Each time teaching staff explained to William that his comment had been offensive and had caused other students to move away from him William would feel bad, say he would not make that comment again and could even come up with alternative comments to use in the future to replace the offensive comment. After two years not much had changed in William’s ability to refrain from using offensive comments or ask questions that were considered rude or inappropriate.

I was tasked with spending an hour a week with William in regard to this situation. During our time together he would tell me how things were going at school. He wasn’t able to identify comments he had made that had gotten him in trouble or questions he had asked that had been met with rebuff. Before using these words his only goal had been to be friendly in seeking out social interaction with other students or teaching staff. He had not meant any harm by his words and really didn’t seem to know after using problematic words that they were indeed problematic.

I knew from working with William in the past that he learned more readily when he could see it written down. We started a running list of comments and questions. I tried to make it fun by rolling my eyes and saying very exaggeratedly, “Oh, my gosh! That’s one for our list!” After a few weeks William started asking immediately after saying something questionable, “Is that one for our list?” Here is a sample of William’s list:

YOU MAY THINK IT, BUT PLEASE DON’T SAY IT IF NOTHING GOOD WILL COME FROM IT

  • That jacket is ugly.
  • Why does your breath stink?
  • What you are talking about sounds boring.
  • Your feet look too big for your body.
  • I don’t like you as much as I like Jeff, but I do like you enough to talk to you when Jeff is absent.
  • It smells like feet in this lunchroom.
  • Do you have poop stains in your underwear?
  • If Miss Jones had a husband she could kiss him.
  • I never saw any clothes as big as Mr. B’s!
  • Green notebooks are the worst. (friend has green notebook)
  • My armpits stink. Want to smell them?
  • I can see boogers in your nose.

Over time, William could hit and miss guess when he said “one for the list.” This led us to look at how one might actually become a better guesser about having said “one for the list” before other people actually told them. (For more information on this see Learning the Hidden Curriculum: the Odyssey of One Autistic Adult). Once William was able to identify when he made a social error we worked on strategies to repair a conversational glitch. This process took most of the school year, but certainly paid off for William in terms of increased friendships and teachers understanding his struggles and being able to support him better.

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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 August 19, 2016. Comment here.

Realities of Being an Autistic Therapist

Activism/Advocacy, Autism and Mental Health, , ,

In my work as a clinician licensed in my state to provide mental health therapy, many parents of children diagnosed with autism tell me how much they appreciate the fact that I am not only a therapist, but also am autistic. They feel they have a hybrid of sorts – I am a clinician, an autistic and have parented both children with and without autism. In addition, I have been an autism consultant for several school districts over the years so also can appreciate the educational side of things when it comes to their children with autism they are bringing to see me in the therapy setting.

But, it isn’t always like this. There are also the times where parents do not particularly appreciate the fact of my autism. For many, their children’s new diagnosis of autism means that they are just beginning their journey of learning about autism. Most people these days learn new things by employing Google or Siri – it is where we start our journey to find out about those things we do not yet know. And thus it is that new learners are thrust into the good, the bad and the ugly about autism.

Unfortunately, when it comes to autism, Google and Siri will lead people to places that may not be the most helpful. Society’s view of autism is far behind what we currently actually know about autism. There are some particular facets of society’s perception of autism that new parents find on Internet searches that erroneously get taken as facts. I would like to address three misperceptions often presented as facts about adults with autism that can negatively affect parents when finding out their child’s new therapist happens to be autistic.

Three Misconceptions Often Construed as “Facts”

  1. Parents of children with autism are the experts when it comes to autism.While it is true that parents of autistic children are the experts on their own children and tend to know really lots about autism, particularly how autism affects their own child, autistic people are actually the real experts on themselves – on their autistic selves and how it is to be autistic in this world. I am in both camps – autistic and parent of autistic. There is a distinct difference.
  2. If autistic adults are able to tell about their autistic experience they are not autistic enough to really know about autism.This is just outright false, yet many parents of autistic children not only believe this, but also act as if it is a fact, thus drawing in newbie parents to unwittingly assume it is so. In reality, it doesn’t even make sense. Getting an autism diagnosis means that the clinician giving the diagnosis determined the individual met all clinical criteria to receive that diagnosis. Thus, if an individual has been diagnosed with autism that individual is autistic. There isn’t any such thing as being or not being autistic enough. It is like being pregnant – you are or you aren’t – you can’t be in the state of not being pregnant enough.
  3. You will never find an autistic adult who is like your child. Therefore, autistic adults cannot speak to autism in your child.This one is a mixed bag. It is true that you will never find an autistic adult who is exactly like your child. I do a fair amount of public speaking on autism topics. Parents will come up to me afterwards and tell me that I am nothing like their 2 year-old, their 6 year-old, their 13 year-old, etc. The fact is that today I am not anything like I was when I was 2 or 6 or 13 years old either! We all grow and change over time whether we are autistic or not. Autistic adults have had a lifetime to learn how to live more comfortably in the world. They should look different from your child. Even your child will look different in the future than he looks today.Because an autistic adult does not look anything like a 2 or 6 or 13 year-old child does not mean that adult cannot speak to the shared experience of autism. An autistic adult, even if their expression of autism is vastly different from that of your child, shares more neurological similarities than non-autistic people share with your child. An autistic adult often understands many things autistic children are affected by and react to due to their shared neurology.

This list could go on and on, but these three misconceptions about autistic adults that can be readily found during Internet searches sometimes directly affect me as a mental health practitioner. Newbie parents of autistic children who have searched and read up online sometimes think these “facts” apply to me because I am autistic. They then extrapolate that because I am autistic I cannot be a good therapist for their child. The reasoning goes something like this: Because you can talk about autism you are not really autistic enough to understand my child. In fact, you are nothing like my child. And if you really are autistic how can you even be a therapist?

It would be easy for me to react personally to this sort of reasoning, but in a therapy setting where I am the therapist, I react in a different way than I would if I were in a social setting where I would react in line with autistic self-advocacy. As a therapist it is not about me, but about my client, or in my case, about the parents of a potential client. If a child’s parents are not in a place where they are able to believe in their heart that an autistic therapist can be just as capable of meeting their child’s needs as a non-autistic therapist that is about them and their journey. It is not about me. They get to be who they are in the moment and when they are in my therapy room I will respect and support their journey. I will offer them choices and suggest they interview one or two more therapists before deciding which therapist will be the best match for them and their child right now. I leave the door open letting them know that sometimes a therapist they think is not a good match just now for their child might be a good match in the future. Whether or not I see them in the near or distant future I wish them well in their journey. Personally, I hope and expect to see a few of these families in the future because I know as they learn more they will grow and change over time. The erroneous “beliefs” gleaned today from the Internet will change for some as they go forward and continue their journey. And indeed, it has already happened for a few families.

I am sharing this from my own life for several reasons. One reason is that it took me time to learn the difference in roles of self-advocate and therapist. It can be emotionally difficult when parents of new clients think less of me because I am autistic. For me this is compounded because I work with autistic clients and their families. Thankfully, this rarely happens, but when it does it is hard. Even so, and even though I know it is about them and their journey and not about me personally, it is still hard.

So, for autistic therapists out there – solidarity and yes, we can serve our clients well while remaining true to ourselves. As we don our therapist hat we choose to make the session serve the needs of our client. Sometimes this means our self-advocacy hat needs to be worn in our heart instead of on our head for others to see. It is hard to believe, but sometimes self-advocacy isn’t the most important thing in the moment.

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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 August 8, 2016. Click here to comment.

Teaching Autistic People

Activism/Advocacy, Autistic "Behavior", Communication, Growing Up Autistic, Hidden Curriculum, Sensory Solutions, Social Considerations, , , , , , , , , , , ,

Just like people of all ages can learn, so is it that autistic people of all ages can learn. It is an utterly sad state of affairs that this even needs to be said, but unfortunately, it needs to be said. Too often I see autistic children being babysat rather than being taught at school. When I ask about academic curriculum being used, I am told, “Oh, he has autism” as if this is an answer to my question.

In my work as an autism consultant I am called on to go to public schools to see autistic students who are thought to be failing what the system has to offer. Most of the time students I see have behaviors that don’t work well in a school setting. For all students I am called in on, I use the stabilization techniques below, which are also the first steps I use when teaching autistic students if the student is not stabilized. This is why I can say that even when your student has autism, including when behaviors are present, he can learn just like any other student can learn. Autistic people are just as deserving of an education as other human beings. That being said, specific supports must be in place to insure access to that education. After all, nobody can do math (or any subject) when they are literally bouncing off the wall (a sign of extreme sensory disregulation).

Stabilization

  1. Internal Regulation (sensory diet)
    Autistics have a neurology that means many systems (sensory, emotions, movement) in their body do not automatically regulate. This means conscious attention and effort must be brought to regulate whatever systems need regulation. For most autistics I work with, the sensory system is so disregulated that it masks emotional and movement disregulation.

  2. External Regulation (interactive visual schedule)
    It really helps to know what is going to happen when – the schedule of events.

    Most students have a neurology that can pick up this sort of information without being instructed. They can sort out the spoken words of the teacher. Students with autism typically have weak auditory processing abilities. Their neurology may not allow them to take in verbal words, sort out which words are relevant and process those words to understand what will happen next. This means every transition from one activity to another can hit them as a huge surprise, causing further disregulation.

    When typical students are distracted and miss the teacher’s verbal instruction of “get out your math books now” they usually become aware that the other students are getting math books out of their desk so they know they are meant to get out their math books too. Autistic students do not pick up these external cues as readily.

    Even when they see other students getting out math books, autistic students do not necessarily take that to mean they should also get out their math book. This has nothing to do with cognitive ability. It has to do with weak connections between areas of the brain – several areas of the brain working together to synthesize environmental, social, emotional and other kinds of information to inform them “I need to get out my math book.”

    Visual schedules support this issue for most autistic students. It is often helpful for the schedule to be interactive – meaning the student needs to do something with the schedule before each transition.

  3. Relationship
    Most students I have been called on to consult for have experienced much angst along the way. They know they are not like other kids. They may or may not know they have autism. One thing I find is that students who are able to communicate are very aware they are different from other kids and they have made up a narrative to explain their differences to themselves. I have been honored by a number of students sharing these stories about why they are different. I have yet to hear a positive story. They are typically stories about major character flaws, sometimes character traits they have heard others ascribe to them such as lazy, stubborn, willful, violent, refuses to share, refuses to co-operate, etc.

    As I begin working with new students I typically use a simple interactive schedule to show them “work” and “sensory break.” I ensure they are successful at following this schedule even if it means we work for a few seconds and engage in sensory regulating activities for a much longer time. I am visually instructing how schedules work while getting the student’s sensory system regulated and doing that in the context of forming a positive relationship.Most students I see have not experienced a lot of positive relationships. They have learned not to trust others around them. I am giving them an exact visual way our time works. They can count on it, become part of it and will always succeed. Over time strong relationships develop. Once a relationship is solid, we know what sensory activities are needed (along with how long and how often) and the student has mastered his interactive visual schedule I know he is now stabilized. Once stabilized we are ready for more formalized instruction.

Instruction

  1. Identify and Teach Needed Skills
    Besides academic instruction, students with autism often have particular skills for which they need to receive direct instruction. This can be anything from how to open a milk carton to waiting for the teacher to call on you when your hand is raised before contributing. It is helpful to identify a few of the skills that are deal breakers to your student getting along in the classroom. Learning and using these skills can be intertwined with academic content and other parts of the day.

  2. Ensure Success by Decreasing Task Demands
    Differentiated Instruction is one way to reduce educational task demands to match the needs of an individual student while ensuring them opportunity to learn along with their peers even though he may not have the same personal resources to bring to the task. My favorite person when it comes to differentiating instruction is Paula Kluth. Every student can do something. If you need ideas on how to use general education curriculum for students with autism who you think cannot do general education curriculum please look up Paula’s work. (paulakluth.com)

    My favorite people when it comes to a discussion about decreasing task demands are Ruth Aspy and Barry Grossman. (https://www.zigguratgroup.com/pages/services) An example of decreasing task demands for a student who struggles with handwriting is to take handwriting off the table in all subjects except Handwriting Instruction. Perhaps a scribe is used to do the actual handwriting task or an app such as Dictation Dragon, which means he can now do creative writing through dictation. If the student is an efficient typist perhaps that is the way to go, which means the student can now do social studies assignment that involves answering questions with a paragraph.

  3. Reinforcement
    There is significant brain research that shows students with autism do not benefit from the same kind of social reinforcement that typical students do. For typical students, in general, the more social opportunities you can add into instruction and use for reinforcement, the more learning that takes place.

    For students with autism, social reinforcement and adding social aspects to learning detract rather than enhance learning. Tangible reinforcement tied to learning has been shown to work better than social reinforcement. In fact, it has been the ticket to learning for many autistic students.

    NOTE: I realize ABA therapy has had a history of using reinforcement in a punitive manner tied to repetitious drilling, often quite disrespectfully. This makes punishment, demeaning drilling and disrespect wrong. It does not make reinforcement wrong. All human beings benefit from positive reinforcement.

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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 in June 2016. Add a comment here.

Autistic People: Persons or Projects?

Activism/Advocacy, Autistic "Behavior", , ,

Autistic people experience the world differently than non-autistic people experience the world. One reasons for this difference is the autistic sensory system is quite different from the neuro-majority, which is considered the norm. In addition, the autistic thinking style has differences from the neuro-majority norm.

Autistic Sensory and Thinking Differences
The autistic sensory system takes in information from the environment. This information can come in too big, too small, delayed or distorted. Autistic thinking style is often visual, concrete and many have a thinking-in-pictures style of their own. This means processing can happen visually rather than with words. The processing typically does not happen in real time, but can be delayed for moments or for days or longer. Information storage may not be category based, but instead arranged according to unique schemata. This may make the path of retrieval of stored information take longer.

Example: One time I was in a conference-planning meeting at a new venue. We had just returned from a tour, served ourselves refreshments and gathered at the conference table to discuss business. Out of the corner of my eye I saw a bug walking across my shirt. I snatched up that bug and held it out at arms length pinched between my index finger and thumb. A friend sitting next to me asked, “What’s the matter?” to which I replied, “Bug!” She snatched the bug out of my hand and dropped it on the floor.

In the meantime, with my arm still outstretched as if I was continuing to hold up the bug, my autistic brain was busy processing the bug information. My brain thinks visually. I have a visual bug category. It looks like an old fashioned Rolodex where we used to store names and phone numbers before society went digital. My bug storage Rolodex was automatically flipping through the pictures – one bug picture after another. I must say, I am an old lady – at least old enough to have accumulated lots of bug pictures! It takes time to flip through this size Rolodex, looking at each bug picture.

I did not tell my brain to do this, but it is simply the way my brain does business. My brain automatically goes for the match in order to label and thus sort an experience. I needed to look at every bug card in the Rolodex to come to the fact that the bug I picked off my shirt was not a bug at all – it was a peanut skin! I must have dropped the peanut skin onto my shirt when I was eating the peanuts on the refreshment table!

Resulting Behavior
All of these many sensory and thinking differences often mean that the autistic person will exhibit behaviors that people around them find unusual simply because they do not share the experience of an autistic brain. These behaviors are not right or wrong. Instead they are what naturally flow out of an autistic brain. As such, the behaviors do not need to be changed if they are not hurting anyone. Instead, the target of change for behavior that is merely different is not the person exhibiting the behavior, but those around him so they might understand the behavior.

In the above example my holding up the “bug” while waiting for my brain to process the information did not need to change. Instead, people around me needed to be educated in why I was doing what I was doing. What actually happened is that most people ignored me and went on with their meeting. The friend sitting next me did what she thought might be helpful – taking the invisible “bug” and flicking it on the floor.

Societal Response
In situations such as this where an autistic person’s behavior is unexpected, people generally try to be helpful.

Person or Project?
If non-autistic people understood autistic behavior as a natural, reasonable response to the working of an autistic brain it would allow them to have a different response. Right now most people respond to unexpected autistic behavior with the assumption that it is wrong behavior and thus needs to be fixed. When this is the case the autistic becomes a project to be worked on – someone who needs instruction or punishment (depending upon your persuasion) so they can be made to look normal. The underlying assumption is that it is best to look normal. Nobody seems to consider the damage this does over time to autistic people. Thus, it has come to be that most of society views autistics as projects to be worked on so they might change.

I am hopeful that as people come to understand the autistic brain has many differences with resulting behaviors. This blog is addressing most autistic behavior – the behavior that is not hurtful or harmful – the different behavior. (Occasional autistic behavior is harmful in that it hurts somebody or seriously damages property. This blog is not addressing this category of behavior.)

I am giving neuro-majority people a pass – you all no longer need to take on correcting our naturally autistic behavior! Instead, approach it with kindness. Know we are responding naturally in light of our autistic brain. Just like you do not owe us an explanation of your everyday behaviors, so is it that we do not owe you an explanation of our everyday behaviors. Some of us can explain our behavior at times and others cannot. Some of us want to explain our behavior (and have differing levels of access over time to do so) and some of us don’t. Please be respectful and patient.

Also know that because you are the majority you get to bestow upon us the status of “person” or “project.” Unfortunately, even though autistics have long ago decided they are people and not projects, it does not change society’s view. Only the neuro-majority has that power to change societal view of autistics from “projects” to human beings. Ultimately, we welcome you to view us as fellow human beings rather than projects to be continually worked on. This will be more fun and more rewarding for all of us!

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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 In June 2016