Category Archives: Social Considerations

Autistics Can BE Friends

Activism/Advocacy, Social Considerations

Just like people in the neuro majority do not automatically understand social norms of autistics so it is that autistics do not automatically understand the social norms of the neuro majority. This is not complicated. Our different neurologies sort us out to have different norms when it comes to behaviors around friendships.

As a society we seem to operate on an assumption that the social ways of the majority are the right ways. We do not think about this or talk about this. We all define the standard by a majority rules mentality. Then, anyone who deviates from this standard is defined according to his deviation from the norm. Most people don’t even think about this. It is just the way society operates.

However, I think about it. In fact, I think about it a lot. I also believe others should think about this more than they do. If people thought about this more they would come to understand how wrong this not-even-talked-about societal assumption is and how it can lead to hurting people.

This is what I am thinking about just now:

It hurt me when as a little girl all the kids had friends, but I only had peers. The other kids were my peers. They could sign up to be my recess buddy or lunch partner for the day. We all knew these volunteers were really not my friends even though adults would call them that.

I knew that I was the only kid in the class who could never be counted as a peer to anyone else. I also could never be the recess buddy or lunch partner – only the kid who needed one.

This continues to hurt me as an adult. It hurts you too. You may not even know our societal assumption that the social construct of friendship based on the perception that neuro majority way of carrying on friendships is the right way hurts you. It doesn’t even matter if you know it. It will still hurt you. This construct leads to social injustice. And whether you are aware of it or not we are all hurt when social injustice is part of our world.

It is social injustice when one group of humanity is assumed to be capable of being the friend while a smaller group of people is assumed to only need a friend. When you only see me as needing a friend we all lose something. When I was younger and only saw you as being a friend (but not needing a friend) we all lost something.

You see, I can also BE a friend, and in fact AM friends WITH some pretty wonderful people in my life. It took me most of a lifetime to figure this out. Autistic people are just like neuro majority people in that we all need a friend and we all need to be a friend.

I am writing about it hoping you will think about this more. Turns out I am more like you than I am different. I am able to BE a friend just fine – even when I do not act the way the neuro majority act when making and being a friend. Imagine that!

WARNING: If you think about this long enough you may need to change your paradigm of friendship when it comes to autistics. Instead of thinking it is good, kind, noble or heroic to befriend an autistic you may wind up hoping that someday one of your friendships might be with an autistic. WITH. Equal footing. Friends with each other.

judyendow2300

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

Helping the Poor and Disabled

Activism/Advocacy, Social Considerations

The holiday season is upon us. Opportunities abound to volunteer for a variety of good causes. It makes me cringe because during my lifetime I have been part of these “good causes” – sometimes part of “the needy” that the rest of humanity is encouraged to help and other times part of “the help.” I cringe because I have made many mistakes, regardless of my group identity from year to year, as I shifted from “the needy” to “the help.”

Please don’t get me wrong. There is absolutely nothing inherently wrong with helping others. It is something I consciously instilled in my children as they grew up, each holiday season choosing the projects to which we would donate our time and resources. Like others, I often purchase holiday gifts that support entrepreneurship of women in underdeveloped countries, disability groups and an assortment of charities. These things are nice and right and good.

What is NOT nice and right and good is when our actions stem from us drawing a mental line-in-the-sand placing “those people” we are “helping” on the other side – over there, away from us. Often we are not even aware when our attitude slides into this direction because it is such a prevalent societal attitude that it actually seems to be right and good when, in reality, it is nothing more than ableism dressed in pious clothing for the holidays. Sometimes when ableism is tied to holiday cheer and goodwill it is easier to rationalize and to call it by other names such as the Christmas spirit or to think it is part of peace on earth and good will towards all men.

Regardless of what you call it at holiday time or at any other time of the year there is a way to figure out if what you are doing is ableism or considerate and helpful. Anytime there is the proverbial line-in-the-sand creating any us versus them groups you are dealing with ableism. Sometimes ableism is easy to actually see with your eyes and other times only you know because ableism is in the way you think and feel. This is tricky because when you are caught in it the ableist thinking and feeling seems right and good, especially since ever so many people in our society participate in this status quo.

Here are some examples from my own life along with examples of both my ableist thinking and hopefully, some more recent nonableist thinking:

  • Toy donations where you purchase a toy and place it in a collection bin to be given to a “needy” child who somehow qualifies to receive a free toy.

My Ableist Thinking: It is good to give to poor children. It is not their fault their parents don’t know how to handle money or can’t keep a job.

Then, I remember when I was poor with three small children. I learned many things such as there is no good way to handle money when you have none and you cannot hold a job without reliable transportation and child care – both of which cost money you need to first earn to be able to purchase.

Today’s Thinking: It’s nice for all kids to have toys and gifts for Christmas.

  • Food drives where you donate specific food used to make up baskets or give money to the organization making the baskets to use in purchasing the food.

My Ableist Thinking: Parents should not have more kids than they can feed, but it is not the fault of the children. Those poor kids! I will gladly give to help them.

Today’s Thinking: Nobody should have to worry about where the next meal is coming from. In a country with our resources this is wrong.

  • Adopt a family where you purchase gifts from a wish list for each member of a family. Typically clothing sizes are included in the information. Sometimes giving groceries to make a holiday meal is part of the gift.

My Ableist Thinking: I wonder how parents get in the situation where they sign their family up to be adopted by a stranger just to get gifts and food. After all Christmas comes every year. It isn’t like a surprise that catches you off guard. If these people were smart they would have planned ahead for extra expenses of the holidays.

Then I was a mom with three small kids leaving a shelter to make my way in the world. Unbeknownst to me the shelter automatically enrolled us in an adopt-a-family program. I was embarrassed to accept thick, warm, stylish new winter jackets for my kids from the person who adopted my family. I invited the woman delivering the coats inside to warm up. I discovered that she herself went out and bought the coats for my kids. When I asked her what made her decide to do that she simply said, “Everybody in Wisconsin needs a warm coat for the winter.”

Today’s Thinking: I am so glad to be part of this world and can pay it forward because the truth is everybody in Wisconsin does need a warm coat for the winter.

Plain and simple; we are all part of something bigger than ourselves. Our attitudes are like markers used for drawing lines that reflect how we will approach and interact in the big wide world on the other side of our skin. When our attitudes draw circles, making us part of the human race, we are inclusive. When our attitudes draw lines putting any group of people on the other side of that line away from us we are playing with ableism.

This means that the very same actions we muster up when helping the poor and disabled can come from a place of inclusion or from a place of ableism. One attitude shares joy and life, the other a crushes with a heavy unworthiness sometimes drawing out a smoldering anger in others. Will your attitude draw circles of holiday meaningfulness where you include yourself in what already is or will your attitude draw lines that allow you to help those poor and disabled people on the other side?

judyendow2300

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

I ALREADY AM A HUMAN BEING

Activism/Advocacy, Autism and Aging, Autistic "Behavior", Social Considerations

Written in English: I ALREADY AM A HUMAN BEING
http://www.judyendow.com/advocacy/i-already-am-a-human-being/ ‎

French Translation: JE SUIS DÉJÀ UN ÊTRE HUMAIN
http://www.judyendow.com/french-blogs/je-suis-deja-un-etre-humain/‎

I do not know if you have ever thought of it this way, but it is a step up that today autistics have the opportunity extended to prove themselves human.

As bad as that is and wrong in ever so many ways it is a step up from 50 years ago when I was a kid and we were not even given any chances to try to convince anybody of our worthiness as a human being much less our intelligence. It is all so wrong and such a slow moving shift it is sometimes difficult to remain positive.

This past week I read two news articles on the same day that made me wonder if anything at all is changing in the attitudes of the general public in terms of knowing and accepting autistics for the human beings we are – YES, AUTISTICS ARE HUMAN BEINGS. Even when we do things differently based on our different neurology WE ARE FULL-FLEDGED HUMAN BEINGS. We do NOT need to first be made to act neurotypical before you grant us the status of HUMAN BEING because WE ALREADY ARE HUMAN BEINGS. I get so weary of reading sentences embedded in autism related news articles that seem to be based on an assumption that we are not truly human, but perhaps can be made into a human being by being forced to behave like a neurotypical person. Here are a few examples:

EXAMPLE 1:  This study “examined the relationship between loneliness, friendships and well-being in 108 adults with autism aged 18 to 62 years. The study found that people with autism who have a group of good friends are less likely to feel lonely, depressed and anxious than those without many close friends.”

MY COMMENT: If the presumption is that autistic people are human beings why do we need a study to show that autistic people, just like human beings, feel less lonely, depressed and anxious when they have friends?

EXAMPLE 2: “A diagnosis of autism does not eradicate the essential desire in people to need intimacy. The desire is present, even if the means to achieve the desire – such as confident eye contact, an appropriate smile, looking and not staring – requires intervention by sources that understand autism. The main problem reported for the current lack of tools to help autistic people romantically is funds.”

MY COMMENT: Autistics have human desires because WE ARE HUMAN BEINGS. The means to achieve intimacy (or to achieve anything at all connected with our own quality of life enhancement) does not depend on funds to create programs with interventions that force us to act neurotypical.

It is burdensome to have to continually try to convince so many people that AUTISTICS ARE TRUE HUMAN BEINGS. I so much appreciate my autistic friends and allies especially on the days I feel down about the way I am perceived as not quite a real human being. This is why we so much need each other – so we can take turns holding the space for one another when it seems personally hopeless. And onward we go living our lives to the best of our abilities sometimes taking the tickets others extend to us to be part of their world.

And when people don’t willing give me a ticket to participate in the human race – well I hate to say this, but I have learned how to sometimes steal tickets and force my way in at times. I hate stealing, but sometimes it is better than being denied access. The devil part of me wants autistics to go to stealing tickets classes rather than social skills groups. It would be great to learn to take our place in the world being who we are rather than being made to act the part of who we are not as the only way to be allowed access to membership in the human race.

Inclusion is great when it happens, but it puts me in the position of being dependent upon your benevolence to extend it to me. Even though inclusion is meant to be a good thing, and it often is, inclusion also practically turns out to mean that you get to decide when, where, if and for how long I will be given the ticket to be part of humanity.

I am near retirement age and tired of needing to continually wait for society to bestow my own humanity upon me and to act as if that is really theirs to extend to me when in fact it is not! Because you see, regardless of what you believe or how you act – I ALREADY AM A HUMAN BEING.

REFERENCED LINKS

http://sfari.org/news-and-opinion/blog/2013/adult-focus

https://www.autismdailynewscast.com/romance-and-autism-dating-is-more-than-possible-for-people-with-asd/

judyendow2300

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