Tag Archives: mental health and autism

Autistic Neurology and 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.
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Disability Policy: Clinton Versus Trump

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.
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Providing Sameness and Routine While Living In Unfamiliar Surroundings

Many children with special needs thrive in an environment with a high degree of predictability, sameness and routine. In the aftermath of a natural disaster life is anything but what our kids need to succeed. Often entire families, neighborhoods or communities are in the flux of confusion, chaos and change and will be for quite some time to come. Putting sameness and routine back into your child’s life as quickly as possible will be helpful. How can you do that when you have no idea what life will hold for you and your family in the days ahead? Here is one simple strategy that can be used in many different ways:

Visually mark what belongs to your child. You can do this with masking tape, stickers or a washable marker. When everything is new and living spaces are suddenly shared it becomes difficult for children to understand boundaries. I wore a roll of masking tape around my wrist for several days while in a shelter. I used it in a variety of ways. The more I used it, the more my children came to understand that when they saw the tape it meant “this belongs to me” or “this is where I can be.”

Visually Define Space:

  • Put tape on the floor to define boundaries of your family’s sleeping space, your child’s play space, etc.
  • Put a blanket or sheet on the floor to visually define a play or homework space, knowing that while the actual place to play or do homework may change, the sheet or blanket can be a constant.
  • I put tape on the chair where my kids could sit for meals – the chair was always a different chair and in a different spot, but putting a piece of tape on it right before my child sat on it visually defined the space and provided a sameness and routine of sorts.
  • One child was so disorganized as to need a piece of tape on his plate and cup in order to eat and drink.
  • If using unfamiliar bathrooms are problematic get and use a potty chair. Put tape on the potty chair if needed. Great if the potty chair can be used in the bathroom, but in reality it is more important that your child use the potty chair than where the potty chair is located.

Visually Mark Belongings:

  • Staying hydrated is more important than eating solid food in the short term. If bottled water is provided try to get a half dozen of the same bottles to keep. Each day the kind of bottled water available may change. If you are using tape, stickers or markers put them on these bottles of water. When the bottles are empty you can refill them from differently labeled bottle water if necessary in order for your child to accept it as something that belongs to him and increase the likelihood he will stay well hydrated.
  • Children may, out of necessity, need to get used to a whole new wardrobe all at once. Some things that may be helpful when choosing from the clothing immediately available include choosing the softest fabrics (second hand clothing often is more acceptable on sensitive skin than new clothing). Sweat suits in cold weather or t-shirt/short sets in hot weather can serve as both clothing and pjs eliminating the need for your child to change out of pjs if that is an issue. Many times new clothing will be donated at shelters. If possible choose several days worth of the same outfit for your child. This means he will have many days of new clothes, but each outfit is exactly the same. If purchasing new clothing several of the same outfit in different colors may be helpful in that your child will have several outfits that all feel the same to wear. Sweat suits or t-shirt/short sets can eventually become pjs in the weeks ahead as you introduce new outfits for daytime wear.
  • If your child has become used to having things marked with tape or markers you might also mark his clothes so he can feel like he is indeed wearing his own clothes, as evidenced by the tape or marker spot. These markings can be placed on the front inside hem or on the outside if necessary for your child to have it visible without needing to flip the hem over to check. Put the same mark in the same place on every outfit.
  • When your child receives toys, books or personal care items such as toothbrush and comb you can also mark these items to visually identify to your child that these items belong to him.

These are but a few ideas to get you started in bringing some predictability, sameness and routine back to your child even when, in reality, there seems to be no anchor in your daily life just now. Visually defining space and marking belongings can go a long way in helping your child make sense of the confusion, chaos and change that comes with picking up the pieces after a natural disaster.

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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 16, 2016.
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