Tag Archives: autism acceptance

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.

Disability Policy: Clinton Versus Trump

Activism/Advocacy, , , , , ,

In a few weeks we will have elected a new President of the United States. Many of us get our information from watching TV. The trouble with this is we only get the information the TV decides is news worthy. Unfortunately, most things concerning disability are not newsworthy. This means that rather than seeing a candidate’s disability policy on the evening news we are more likely to see a candidate’s latest purported scandal whether it is about deleted emails or admitted past sexual abuse. While these things can be informative, I think it is helpful to also understand where the two major candidates stand on issues directly affecting the disability community. Here is some of that information put side by side for comparison.

Specific Disability Plans

Trump: There is nothing specific on Trump’s website regarding any plans for any disability in particular. However, I do remember a few months back there was at least one line that said he wanted to expand mental health coverage. I believe it was in reference to veterans.

Clinton: On Clinton’s website a comprehensive plan for autism and for mental health is outlined in detail along with her plan for combating HIV/AIDS both in the United States and abroad.

The autism plan is quite comprehensive covering many areas such as expansions in early screening and insurance coverage. Additionally, several life span issues affecting autistics are addressed including plans for targeting bullying in schools, getting assistive technology to those who need it, life span caregiving for those who need it along with community living options for adults. I have just learned this morning that part of the research she is in favor of funding includes genome mapping which, if realized, will undoubtedly lead to less autistic people being born.

Her mental health plan addresses areas of earlier diagnosis and treatment, expanded insurance coverage and brain research. She emphasizes treating the whole person in an integrated fashion.

Health Insurance and Medicaid

Trump: He plans to repeal Obamacare, going back to insurance coverage as we had before Obamacare became law. In the free market health insurance plans denial of coverage for pre-existing conditions would come back into play. Additionally, the coverage of adult children to age 26 that the Affordable Care Act brought about for us all goes away leaving many of the nations young adults uninsured. Workplaces would not have to offer health insurance to employees.

Insurers would be free to offer any plan of their choosing in any state of their choosing. All health insurance premiums would be tax deductible. His plan to reduce prescription drug costs is to get the drugs from other countries where they are cheaper, but may not meet the quality and standards of our country. He supports tax-free health savings accounts.

As for Medicaid, Trump’s plan is to turn it over to the states through block grants allowing each state to use the money as they see fit to provide some or all of health care costs to Medicaid eligible individuals.

Clinton: She sees affordable healthcare as a basic human right and would expand the Affordable Care Act (Obamacare) and apply fixes to the parts that are not currently working well. Her goal is universal health coverage for all Americans. At this time she plans to leave Medicaid intact and expand it’s coverage to include all low-income citizens.

Clinton’s plan is to reduce co-pays and deductibles. She further plans to reduce prescription drug costs through bargaining. Mental health treatment is slated to become part of ordinary healthcare. A specific autism plan includes increased access to services across the lifespan.

Community Living/Medicaid Waivers

Note: In the past children with complex or severe medical conditions were often institutionalized. Today it is more common for families to receive a variety of support services that allow their children to remain home while receiving the medical care they need rather than being placed in institutions. The funding for these services comes through Medicaid Wavers, which turns out to be less costly than institutionalization.

Trump: No record can be found of Trump ever addressing this issue specifically. However, he has stated that mental institution and mental health programs in this country need to be reformed without giving any details on how he proposes to do so.

Clinton: There are numerous plans on Clinton’s part which include

~~ Supporting Developmentally Disabled Act along with creating the Autism Plan that both allow for or expand support services at home for all children with disabilities, especially support services to caregivers

~~ Strongly supporting the Olmstead decision that allows individuals with disabilities to live in community settings and has a plan to ensure each state is in accordance with carrying out this provision

~~ Plan for expanded support provided to individuals that make it possible for them to live in a variety of community settings

In conclusion, it is helpful to look at these candidate’s websites and to listen to their campaign speeches. It is also important to me to see how they have treated people with disabilities over the course of their own life and during the course of this presidential campaign.

While Trump has only discussed disability in reference to veterans and has publically mocked a news reporter with a disability, Clinton has spent her life working on behalf of individuals with disabilities. She has outlined plans to support people with disabilities to live in integrated community settings, to improve employment with fair wage opportunities and to provide tax relief to caregivers. Clinton has been the only candidate to give an entire campaign speech on disability rights. She is the only candidate to articulate both a comprehensive plan for mental health and a comprehensive plan for autism.

While it is good that Trump is concerned about disability issues for veterans, it is much more inclusive that Clinton is concerned about disability issues for a much wider range of people affected by disability as evidenced by thought out plans including a way to pay for them.

For me personally, even though I am well able to compare and contrast where the candidates land on issues I also have a personal question I ask of myself before voting. As President, who will put each of us closer to the reality of life, liberty and the pursuit of happiness – Trump or Clinton? For too many disabled people alive today this has not ever been reality.

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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 October 25, 2016.
Click here to comment.

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.

Autism and Consequences

Autistic "Behavior", , , , , , , , ,

One way people learn is from consequences. For example, if you leave your car parked outside with the windows down and it rains, the natural consequence is that your car seats will get wet. Sometimes a person with authority over another engineers a consequence for certain behaviors as a way to decrease the frequency of unwanted behaviors. For example, a mother or a caregiver might decide that if hitting occurs at the park there will be no going to the park for the next two weeks. This sort of engineered consequence for unwanted behavior works for most people most of the time. It is why we use it to successfully teach our children to become responsible citizens – responsible for themselves, their behavior, their belongings and beyond. These kinds of consequences rarely work well for individuals with autism.

Underlying Brain Functioning
For consequences to be effective in deterring future behavior, a typically functioning brain needs to be in place. For example, if an individual is prone to hitting others when at the park we decide that because he very much enjoys going to the park, the consequence of not going to the park for two weeks will help him to not hit or at least hit less when he does go back to the park.

The underlying brain function that causes this consequence to be helpful in reducing hitting is very intricate and is based on reliability of connections between many areas of the brain. In practical terms it means that in order for this consequence to change the hitting behavior, at minimum, these elements must all function smoothly for the person receiving the consequence:

  • Understand hitting is wrong
  • Love going to the park
  • Understand hitting at the park will mean no park for two weeks
  • Be negatively affected during the two week park ban, i.e. wishing it wasn’t so
  • Dislike the park ban so much that he is willing to not hit
  • Come to learn what he can do instead of hitting
  • Have the skills and ability to carry through with alternative behaviors
  • After returning to the park and finding himself about to hit – his brain quickly and efficiently connects all the dots, gathering up and synthesizing information from multiple areas of the brain in a split second whereby he can put together an informative and behavior-altering understanding that keeps him from hitting.

Most people have brains that can accomplish all the above bullet points. However, people with autism do not. Autistic people generally have brains that do not support the last bullet point. Remember, an autistic brain means the connections between areas of the brain are weak making it difficult for the brain to pull together information from the various brain regions – the very thing needed for consequences to change future behavior.

A confounding factor here is that autistic people, after an incident and when in a calm state, can repeat to you exactly what happened, why it was wrong and what they will do instead of hitting next time they are in a similar situation. Then, the next situation arises and the hitting again occurs. After the incident is over the autistic individual is usually remorseful, knows what he did was wrong, understands what the consequence will be and promises not to hit next time, reciting all the options he might employ other than hitting. Then, the next situation arises and the hitting again occurs. Repeat, repeat, repeat over and over and over.

Regardless of how many times the consequence of park ban is employed it never seems to work in terms of stopping the hitting. Many times people assume the consequence of park banning isn’t a big enough consequence so they up the anti. I have seen this get out of hand quickly and regardless of how big the consequence or how articulately the autistic individual can explain the behavior/consequence sequence it is not effective in producing the desired behavior change.

After a time of bigger and bigger consequences, parents, teachers and caregivers start blaming the person with autism as if he wants to be a bad person. They say he is making poor choices and ascribe character flaws such stubborn and mean. It doesn’t turn out good for anyone, including the autistic.

Ways to Get a Different Outcome
Once you understand autistic brains will most likely be unable to attain the last bullet point in the above list – not because the individual consciously chooses this, but because of the brain functioning available to him – it would make sense to stop using consequences in hopes of changing behavior. But, we still have the hitting behavior. What can we do instead? Here are some ideas that have worked for numerous autistics of all ages whom I have worked with:

  1. Escalating Behavior
    If the behavior is escalating in nature; i.e., if you can predict when it will occur because you can see the build up then you can prevent the behavior by intervening very early on rather than waiting until the last minute when it is impossible to stop the behavior from happening. In escalating behavior the physiological fight/flight kicks in right before the behavior occurs. This means the individual is operating on survival instinct, feeling he is fighting for his life, no matter how small and non-life threatening the situation actually is in the moment. Thus, intervention when the behavior is occurring fails. Successful intervention is at the beginning stages. For more information please look at Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals With ASD.
  1. Non-Escalating Behavior
    If the behavior is not escalating in nature, remember the reasons an individual gets an autism diagnosis and address those areas – communication, social, specific deep interests, and sensory. In light of this, here is what I do to help prevent unwanted behaviors when out in the community.

A.  Proactively Address Sensory Regulation Daily
Strive to make sure autistic individuals are supported daily in sensory regulating activities. As an autistic myself, daily sensory regulation allows me to be employed and go out into the community each day. It is the same for others I’ve worked with. For the individual in the example, when he was well regulated he was able to cope with unexpected events better. This meant he was less likely to hit.

B.  Plan Schedule Ahead of Time
It is important for most of us to know what will happen ahead of time. This is true no matter how our autism presents. Very few autistic people can track a verbally recited chain of events that are to happen in the future. Some people need a written list. Some need a picture schedule. All of us, regardless of how autism presents in our bodies, like to know the plans rather than to have continual surprises randomly occurring.

C.  Stop Talking
As autistics get overloaded in sensory, social or emotional aspects of situations the ability to process and comprehend verbal input decreases. Helpers typically “help” by talking more. This is the opposite of what is actually helpful to autistics in tense situations.

D.  Use Alternative Communication
Even for a person who is highly verbal, an alternative way to communicate becomes essential in tense or overloaded situations. For example, one individual I worked with had a key chain with mini pictures of the van, a bag of peanuts (his favorite snack), his house, and his favorite video game. When he was having difficulty in the community, I would hand him this key chain. Offering the key chain was a nonverbal way to communicate our exit plan.

E.  Use Positive Reinforcement
In this example the pictures on the keychain showed the order of events and included two reinforcements. First picture was the van. Second picture was the bag peanuts that were in the glove box in the van. Third picture was his house where his favorite video game (fourth picture) would be available upon arriving. Thus, positive reinforcement got him out of the park when needed so as to prevent the hitting from occurring.

F.  Plan and Practice Exit Strategies
Use preplanned signals or visuals to exit a tense or problematic situation BEFORE any problem behavior can happen. In this example the keychain with mini photos was our exit strategy. We went to the park on three different occasions specifically to practice using the exit strategy. Once the strategy was practiced, including eating the peanuts on the ride home and playing the favorite video game, we then went back to the park for an hour – our usual park time. It was important for this young man to actually get his park time.

G.  Assure Social Understanding
After a difficult time and the individual is settled down remember to go back and insure social understanding of what happened. Most autistics are literal and concrete by nature. Social situations are rarely literal and concrete. Thus, we are prone to have a different take on social situations than most other people. I have found it helpful to draw out a situation, finding out the autistic person’s take on it and leaving space in the stick figure cartoon frames for the thought bubbles of other people. Often times the way other people think is a surprise to autistics because it makes no sense to a literal and concrete mind. Social constructs and socially accepted behavior in society are based on this thinking style of the majority. Many autistics benefit in learning this social information.

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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 June 14, 2016. To comment click here.