Category Archives: Autistic “Behavior”

IT IS WRONG TO MURDER YOUR AUTISTIC CHILD.

Activism/Advocacy, Autistic "Behavior"

Issy Stapleton, 14, remained hospitalized in Grand Rapids, Michigan late Wednesday after her mother, Kelli Stapleton, allegedly attempted to murder her. 

State police Lt. Kip Belcher said two portable charcoal grills were burning inside the vehicle where Issy was found unconscious. He said the van’s windows were shut and investigators believe Issy’s mother intended to murder her daughter.

Assistant Prosecutor Jennifer Tang-Anderson said authorities don’t believe the incident was an accident. Benzie County Prosecutor Sara Swanson said she authorized a felony attempted murder charge.

Belcher says Issy may have suffered permanent brain damage from the carbon monoxide poisoning. Issy’s mother was also found in the van and though unconscious when found, is expected to make a full recovery and is expected to be arraigned yet this week in 85th District Court.

Attempted murder carries a maximum penalty of life imprisonment with parole.

The above story is what I constructed by merely pulling from the original story. It is horrifying. Any person who attempts to murder a 14-year-old sparks in us an outrage, as it should. It is not uncommon for people to read this and say, “I hope that murderer never gets out of prison!” or even, “Prison is too good for her!”

I shared Issy’s story above rather than her mother’s story. The news media shares Issy’s mother’s story as if the story is about Issy’s mother and not about Issy. That is because Issy is autistic. For some reason, in our warped culture, being autistic somehow means you don’t count – you are not considered human being enough to count even after someone tries to murder you! In fact, you will likely not even be part of the story after the first few sentences.

The story becomes one of excuses for the mother or care giver who attempts to or actually succeeds in murdering the autistic. At our core, as a society, we hold the belief that a disabled person is better off dead.

We don’t actually talk about this belief, but it is what is underneath when so many can read the story and agree with and sympathize with the murderer. In no other murder scenario do we do this – sympathize with the murder and blame lack of services. Disabled people are construed as a burden to their families and are even thought to be the fault of their own murders! Sympathy starts pouring in for the poor murderer who had no choice and who, in fact, did what any one else would be driven to do under the same circumstances is what we are told by reporters.

WRONG

WRONG

WRONG

There are ever so many things wrong with this story line we see repeated about the “unfortunate tragedy” due to the “lack of services” for the family of an autistic person, while writing out the actual autistic person who was in fact murdered or had an attempt of murder carried out against her.

Here are some facts the news reports do not tell us:

1.  Autistic people are human beings. Human beings do not deserve to be murdered. PERIOD. NO ifs, ands or buts.

2.  Autistic people’s lives are not worth less than other people’s lives.

3.  Autistic people do NOT cause their caregivers to murder them.

4.  Lack of services is not a reason for murder.

5.  If you are a parent or caregiver and feel the only way out is to murder your child you are in crisis. Call a crisis line. Your child may be removed from your care temporarily. Foster care isn’t great, but it will keep your child alive while your crisis state can be addressed.

I know by writing this I will have many parents of autistic children jump all over me saying all the usual things they say. So, I will tell you a bit about me ahead of time.

I was “severe” enough as a child to be institutionalized. As a teen I lived in two foster care arrangements that were not appropriate for an autistic teen. One was a group home for mentally retarded adults (that word was not a bad word at the time) even though I was neither mentally retarded or an adult. The other was a group home for delinquent teens; I was a teen, but not delinquent.

It took me a long time to grow up, but I did grow up. Today I have 3 grown sons, one of whom is on the autism spectrum. I was told my autistic son exhausted all the services when he was a teen, including the state mental institution after which he was returned home to my care. At times I feared for my life. I feared for the lives of my other children. I was only told my son had failed all the services my county had to offer and that I should call the police when he became violent.

I foster parented a severely autistic teen for a short time. I went to college. I got a master’s degree in social work. I worked in clinical settings. Eventually, I limited my practice to autism. Today I have my own business. I am an author, consultant, artist and international speaker on autism topics.

I write all this about myself because, nearing retirement, I have experienced all sides of this many-faceted story. I know how it feels to be the victim, the mother, the caregiver and the social worker.  I understand foster care from the angle of the kid in the system, the foster parent and the social worker. And I can tell you that at the end of the day no matter how I look it I know this:

IT IS WRONG TO MURDER YOUR AUTISTIC CHILD.

If murder is looking like a solution to you it means you are near the breaking point and need help. Call your local crisis center and say these words, “I am thinking about murdering my autistic child and here is how I would do it.” Then tell them your plan. If you do not have a local crisis hot line go to the nearest hospital emergency room and say the same words. It is not a perfect solution. It is a crisis solution, but will ensure you get someone to help you in the moment because murder is not a solution to your problem.

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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

No Link Between Autism and Planned Violence

Activism/Advocacy, Autistic "Behavior", Social Considerations

Due to the media speculation that Adam Lanza, killer of many at Sandy Hook Elementary School may have been affected Asperger Syndrome, concern has developed on many fronts. One concern is that students returning to school who have been previously identified with having an Autism Spectrum Disorder may now be stigmatized, especially those who may exhibit meltdown behaviors while at school.

The politically incorrect question on everybody’s mind is, “Are students with ASD dangerous when they have meltdowns and might this behavior lead to another Sandy Hook kind of incident at our school?”

Some general response in recent news media include:

  • “There is absolutely no evidence or any reliable research that suggests a linkage between autism and planned violence.” The Autism Society of America 12-16-12. https://www.facebook.com/TheAutismChannel
  • “That having Asperger’s or the autism spectrum in your life—as an individual, a parent…etc.—does not carry any bearing with whether or not you will become (for lack of a better term) “a good person” in this life. While the majority of statistics prove that we are infinitely more prone to be the victims of violence than the perpetrators of violence, we are not immune from becoming people capable of making terrible, horrible choices. No one is.” (Michael John Carley, GRASP 12-14-12. Statement on the Newtown, CT shootings.)

In my work with school districts across country and into other countries this is the protocol I use when asked to evaluate and recommend a plan of action for students with ASD who have severe meltdown behavior:

  1. Ensure an interactive visual schedule and implementation of sensory regulation based on individual sensory needs is implemented for 2-4 weeks to stabilize the student. (Endow, 2011) Often times once regulation needs have been met and the student is stabilized most of the behavior fades away.
  2. If some meltdown behavior remains evaluate whether behavior is escalating in nature or not.
  3. Use Outsmarting Explosive Behavior (Endow, 2009) or a similar system to map out the stages of escalating behaviors. This is important because the explosive behavior is best prevented the earlier it is noticed. Once at the height of the behavior the fight or flight response has been triggered, making it impossible to persuade the individual stop the behavior. Nobody acting off survival instinct will be able to stop a behavior they are using regardless of what you do to try to get them to stop. If you understand the stages that come before the explosion stage you will be able to intervene. The earlier you notice the more likely you can support and intervene for successful outcome.
  4. If behavior is not escalating in nature do a Functional Behavioral Assessment and proceed with that protocol.
  5. Use tools like the Ziggurat Model (Grossman & Aspy, 2011) and the Comprehensive Autism Planning System (Henry & Myles 2007) to provide comprehensive evaluation, purposeful meaningful support, and optimal implementation of support strategies across the school day.

To avoid stigmatization of students on the autism spectrum in light of the recent media reports:

  • Make sure staff understand the above quotes from recent autism organizations in response to this situation. Tell staff where to go with student specific concerns or questions on this subject.
  • Address any student’s fear of another student with ASD. Find out what the fearful student believes to be true. Mitigate any unfounded fears with facts. Also assure the fearful student that staff will keep all students at your school safe.  Check in with this student periodically to ensure his/her fear has been alleviated and if not, refer on for proper counseling to address the situation.
  • If this comes up at your school be open about it with the students. Make sure they have the facts to quell their fears and that they know who to go to about any fears or concerns. This is true for all students whether they have ASD, another disability or no disability at all.
  • Instruct staff to watch for and report any teasing or bullying of students with ASD or other disabilities along with not tolerating it and stopping it in it’s tracks.

Together we have witnessed a horrifying terror unleashed at one our nation’s schools. It will undoubtedly have many repercussions amongst the surviving school children and staff across the nation. Together we must go forward, insuring the best outcomes for all students and staff as we ring the bell to start each new school day.

REFERENCES

Henry, S. & Myles, B. S. (2013).  The Comprehensive Autism Planning System (CAPS) for Individuals with Asperger Syndrome, Autism, and Related Disabilities: Integrating Best Practices Throughout the Student’s Day 2nd ed. Shawnee Mission, KS: AAPC Publishing.

Aspy, R. & Grossman, B. (2011). The Ziggurat Model – A Framework for Designing Comprehensive Interventions for Individuals with High-Functioning Autism and Asperger Syndrome
Updated and Expanded Edition. Shawnee Mission, KS: AAPC Publishing.

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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 Autism Research Institute

Preventing Meltdowns: Outsmarting the Explosive Behavior of Individuals with Autism Spectrum Disorders

Autistic "Behavior", Sensory Solutions

Meltdown behavior is quite common for those with Autism Spectrum Disorders. And, indeed, the most frequently asked question by parents and educators is: “What do I do when my child has meltdowns?”

When the meltdown is occurring, the best reaction is to ensure the safety of all concerned. Know that explosive behavior is not planned but instead is most often caused by subtle and perplexing triggers. When the behavior happens, everyone in its path feels pain, especially the child.

Stages of Explosive Behavior

So, what exactly is explosive behavior? In my book Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals with Autism Spectrum (Endow, 2009), explosive behavior is defined as having four distinct stages, followed by a clearly defined recovery period. In addition, the physiological fight/flight mechanism is triggered immediately prior to the explosion.

In this model, the four stages of explosive behavior are the same for all experiencing explosive behavior and are depicted by four train cars called Starting Out, Picking Up Steam, Point of No Return, and Explosion. The idea is to try to prevent the train cars from hooking up because when they do we have a runaway train that ends in explosion.

Working backwards, the Explosion is the stage where the meltdown behavior is evident. Immediately prior to this is the Point of No Return, which is exactly what it implies — there is no going back from the meltdown because this stage is where the fight/flight response is triggered. The pupils dilate, and breathing and heart rates increase. Physiologically, our bodies respond as if our very lives are at stake, and we automatically behave accordingly: We fight for our lives. It is entirely impossible to reason with anyone in this survival mode. As soon as you see the child’s identified Point of No Return behavior you can know the Explosion is coming and need to do your best to quickly create and maintain a safe environment.

The place to impact explosive behavior is ahead of when it occurs. In the Starting Out phase, whispers of behaviors are evident. The Picking Up Steam phase is just that—the whispers become louder. Though you can learn to successfully intervene at these stages, the most effective way to manage explosive behavior is proactively, before the whispers even start.

Strategies to Prevent Meltdowns Before They Start

An individual mix of three major supports and interventions is usually most effective in preventing the first stage of meltdown behavior from starting. These three major supports include proactive use of a sensory diet to maintain optimal sensory regulation, visual supports, and managing emotions that are too big (Endow, 2011).

People with AS usually do not have sensory systems that automatically regulate; instead, they must discover how to keep themselves regulated. This is most often accomplished by employing a sensory diet. A sensory diet for a person with autism is like insulin for a person with diabetes. It is easy to understand that a person with diabetes has a pancreas that is unable to regulate insulin effectively. We can measure blood sugar and know the exact state of affairs, and from there figure out how much insulin the person needs.

Sensory Diet: Unfortunately, medical science does not allow us to take a blood sample to measure sensory dysregulation. However, we can figure out and employ a sensory diet to prevent dysregulation, and just like insulin prevents serious consequences for a diabetic, a sensory diet prevents serious troubles for an individual with ASD. As an adult with autism, I spend time every day on sensory integration activities in order to be able to function well in my everyday life. A sensory diet employed proactively goes a long way in preventing the Starting Out stage of explosive behavior from ever occurring (Brack, 2004).

Visual Supports: Another crucial area of support to put in place proactively is that of visual supports. As an autistic, I can tell you the saying “A picture is worth a thousand words” is the monumental truth. Although each person with ASD has a unique experience, processing written and spoken words is not considered by most of us to be our “first language.” For me, the meaning I get from spoken words can drop out entirely when I am under stress, my sensory system is dysregulated or my felt emotions are too big. Visual supports can be anything that shows rather than tells. Visual schedules are very commonly used successfully with many individuals with ASD. Having a clear way to show beginnings and endings to the activities depicted on the visual schedule can support smooth transitions, thus keeping a meltdown at bay. For maximum effectiveness, visual supports need to be in place proactively rather than waiting until behavior unravels to pull them out.

Managing Felt Emotions: A third area in which many with ASD need proactive support is in managing felt emotions. Most often, felt feelings are way too big for the situation. An example in my life is when I discover the grocery store is out of a specific item; I get a visceral reaction very similar to the horror I felt when first hearing about the 9/11 tragedy. I know cognitively the two events have no comparison and, yet, my visceral reaction is present and I need to consciously bring my too big feelings down to something more workable in the immediate situation. Managing felt emotions does not come automatically, but can be learned over time with systematic instruction and visual supports such as The Incredible 5-Point Scale (Buron & Curtis, 2004).

The good news is that explosive behavior can be positively impacted. With proactive supports, explosive behavior can be outsmarted so individuals with ASD can move on to living purposeful and self-fulfilling lives.

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.

ADDITIONAL RESOURCES

Brack, J.C. (2004). Learn to Move, Move to Learn! Sensorimotor Early Childhood Activity Themes. Shawnee Mission, KS: AAPC Publishing.

Buron, K.D., & Curtis, M. (2004). The Incredible 5-Point Scale. Shawnee Mission, KS: AAPC Publishing.

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First printed on Education.com with permission of the Autism Society.

http://www.education.com/reference/article/explosive-behavior-asperger-syndrome