Autism Awareness and Autism Acceptance

Activism/Advocacy, , ,

Awareness means we know what is hard for us. As we grow up autistic we are measured against the yardstick of “normal” in many ways over and over. Thus, autistic children often have a keen sense of who they are NOT. This deficit-based understanding may be necessary in the diagnostic realm, but it does little to support a healthy lifestyle. Who we ARE in this world – our abilities, strengths and interests – provide us with a satisfying life because that is the way it is with human beings. And yes, autistic people regardless how autistic you think they may or may not be, are ALL human beings. This means ALL autistics have intrinsic value.

Awareness focuses on the deficits – on understanding the deficits of the autism diagnosis – which leads to general assumptions by society of a substandard, less than group of people and it spirals downward from there, as we all have seen in today’s status quo autism rhetoric, stereotypes and assumptions. Awareness extends a hand to the erroneous idea of a flawed group of substandard human beings. Awareness often provides the fertile soil supporting the growth of inspiration porn about our tribe.

Acceptance focuses on autistics rather than on autism. And yes, there is a difference. Autism is our diagnosis; it is about what is hard for us. Autistic is about who we are as autistic human beings; being autistic is about who I am in this world, how I function and what I contribute. Acceptance lends itself to ideas of equality, the premise of different rather than lesser creatures. This can lead to an upward spiral towards embracing concepts such as neurodiversity, inclusion and universal design.

For society, when awareness is the focus – society understands the deficits and which, when unbalanced with the humanity of autistics, often result in a hopeless and burdensome feeling. I believe when autistic acceptance becomes society’s focus we will shift to looking at abilities, strengths, interests of autistic individuals, which will then allow us our place in the fabric of society – as actually equal human beings.

So, at this point in time, as a society we have mostly Autism Awareness, especially during the month of April. We also do have a tiny wee bit of Autism Acceptance, mostly from autistic people themselves and their allies. When society is focused on Autism Awareness deficits of autistic people and inspiration porn about them are highlighted. When society is focused on Autism Acceptance strengths and abilities of autistic people are highlighted – not the fact of their autism.

Going forward I yearn for the day when all autistic children grow up knowing who they ARE (a unique mixture of their interests, strengths, abilities) rather than for who they ARE NOT  (the diagnostic deficits of their autism) as this is what builds a satisfying human existence in this world. We must keep on keeping on as we’ve a long ways to go until autistics are but a part of the fabric of society.

IMG_4662

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 April 28, 2016.
To leave a comment at the end of this blog at the Ollibean site click here.

Autism, Death and Mental Health Therapy

Autism and Mental Health, , , ,

The traumatic event of death is something we all struggle with from time to time over the course of our life. It is no different for autistic people. I am often reminded to be sure to identify exactly what the autistic person is struggling with when it comes to their particular circumstances.

I am remembering youngster who had a pet gerbil that died and he didn’t want to part with the beloved gerbil. Three days after the gerbil had passed the pet was still in the little plastic exercise ball, which the youngster was carrying around with him.

I was asked to help this child process his grief so the pet could be buried and the child could move on. I reviewed the grief process and in particular how it pertains to growth and development, but then discovered that wasn’t at all what I needed for this particular child. Since that long ago time I have learned it is important to first understand the autistic person’s perspective. Both the autistic thinking style and the often-unknown hidden curriculum of society will significantly impact how the problem is defined and what will impact a positive outcome.

Autistic Thinking Style

An autistic person is often very literal and concrete in their thinking. In addition, many of us are visual thinkers. As children we often do not have a way to hold an idea or remember something without actually having that concrete item or to continue to talk about that thing so as to keep the picture of it in our mind. For example, if we have been told that we will go to the library after lunch, we might keep asking, “When will we go to the library?” Often, the function of this kind of question is not to learn the answer, but instead, serves as a way to hang onto that picture of the library in our head.

I am learning that with traumatic events it is important to assess and match the autistic style of thinking (literal, concrete and think-in-pictures) of the particular person with the said traumatic event – in this case the death of a beloved pet. When drawing out the scene where the youngster discovered the gerbil ball was no longer rolling across the floor and his mom told him the gerbil had died, I was able to discover his thoughts.

He thought that as long as he could see his gerbil the gerbil was not in fact dead. This youngster did not have a way to hold the picture of his gerbil in his mind without actually seeing the gerbil – hence his need to carry around the now deceased critter. Furthermore, his reasoning informed him that everything he could see was real and that real things could not be dead. (Believe me – this sort of reasoning can make sense to a literal, concrete, think-in-pictures mind, even though it turns out to not be true at all!)

This youngster’s mom brought in pictures the family had taken when he received the gerbil as a birthday present. The youngster also drew a few pictures of his pet. He was able to use the photos and pictures in place of the actual deceased pet. We practiced various scenarios where he put the hamster ball under a pillow and on the other side of the door so he could not see it and instead looked at the photo. It worked. He could remember his pet by looking at the photos and drawings instead of looking at the gerbil.

Hidden Curriculum

Even after this, he was still reluctant to bury the gerbil. I discovered he was missing the practical information about what happens when a living thing dies. Most people automatically pick up this sort of information. It is assumed knowledge. Furthermore, because most people know this information, it is expected that everybody knows it. People with autism neurology do not automatically pick up all hidden curriculum in the world around them. Often, they need some direct teaching.

In this case the direct teaching was an explanation drawn out on paper. This explanation has been used with others over time so I will make it a general explanation so as to enable it to be useful to any reader who might find it helpful. It is written for mature understanding. It can be adjusted for less mature understanding. In addition, various religious or faith-based wording may be substituted.

A body is a concrete entity. The life force is what makes us be individual people (or our pets to be their individual selves). Without the life force of the essence or spirit, it is impossible for the body to live.

Once a body has no life force it will begin to go bad – like food. This happens with all living things. For example, garden or plant food rots once it is disconnected from its life source – the ground, water, sunshine. In addition, animal food rots once it is disconnected from its life source – the live animal.

Pets and human beings are part of the animal kingdom. Their bodies cannot remain stable, but instead physically break down over time once the life force is no longer present. That is why we don’t save the body of a pet or someone who dies. It will only decay. The body is no longer useful.  So, we bury or cremate it. That way we have a place to go to look at something (grave site or cremation urn) to remind us of the loved one who is no longer alive.
 We often remember the good things and great times we had by looking at photos and recalling fond memories.

To recap, I have learned over the years that utilizing autistic style of thinking and searching for and then addressing areas of unknown hidden curriculum are deal breakers. In fact, without this first step, all sorts of well meaning, state-of-the-art counseling techniques and therapy modalities we rely on, while they generally work for most of the population, often do not produce the intended positive outcome for our autistic clients.

10403277_10153586366118177_1360015086004104671_n

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 April 16, 2016.
To leave a comment at the end of this blog at the Ollibean site click here.

Autism, Accommodation and Differential Expectations

Activism/Advocacy, , ,

People generally are very pleased with themselves when they have made an accommodation for me. I know this because they proudly announce it! In turn, I have learned to say thank you when people announce their thoughtfulness at making an accommodation for me. I truly am thankful because it allows me a fuller participation in the events going on around me. It also makes me smile because I have been making accommodations for people my whole life and it has never occurred to me to announce it!

The fact is that autistics are required to make numerous accommodations every day they are among other people. This is because the world is not set up in a neurologically friendly way to autistics. We live in a very fast paced world where speed in understanding and responding to people is expected. We also have much information constantly being delivered over numerous electronic devices. We expect everything to happen instantly!

For the most part this isn’t a good match for people with autism because we generally have a “too much” experience of the world due to the way our sensory system takes in information from the world around this. Once that information “arrives” it is then, for many autistics, processed differently. A common result of our difference is referred to as a processing delay. This means it takes more time for us to process and respond. Not only is this is a huge disadvantage in our fast paced world of instant expectation, but one unspoken assumption is that I will accommodate for my differences and act “appropriately,” i.e. act as a neuro majority person acts.

It takes time and energy to accommodate another person regardless if you are the person with autism or the person without autism. Based on years of observation of numerous autistics, myself included, I can see autistics pay a much higher cost for the accommodations they must make as compared to the neuro majority person. Part of the reason is the sheer volume of accommodations an autistic is required to make each day compared to others. The really funny part of this is that autistics rarely are in any way acknowledged for the heavy burden of accommodations they must make just to survive in this world while others are thought to be the people making the accommodations! Furthermore, I am expected to make accommodations for you while you have the option to choose when, if, and how often you will make accommodations for me.

This differential is a result of assigning the measure of normal to the experience of the majority of the people. Even though I make considerably more accommodations for you than you make for me, because your experience of the world is considered the norm and my experience the deviation it is the understanding of the majority that I need you to accommodate me and this is true. However, nobody notices all the accommodating other autistics and I have done all our lives!

Another funny thing about this whole accommodation situation is that when you accommodate me, even if you do not announce it, everybody considers you to be a really good person for making accommodations for an autistic. For you, making accommodations is not only optional, but when you do so you are considered a good person.

For me, making accommodations is not optional. Because your ways are considered the norm I am expected to do whatever I need to fit into this norm. For me, making accommodations for you is not optional. It is expected and therefore, no credit given. In fact, the only time people notice me in regard to accommodations I make for them is when I neglect to make them! When I cannot or do not make accommodations for you something is considered to be wrong with me.

The double standard is that you are known as a good person for the accommodations you make for me while I can only be known as a bad person when I fail at making an accommodation for you. And just like you will not be thought of as a bad person when you fail to make an accommodation for me, I will never be thought of as a good person when I do make accommodations for you – at least this hasn’t yet happened in my life even though I have made considerably more accommodations over the years for neuro majority people than they will likely ever make for me!

12494854_10153567419858177_840270945972157726_n

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.

Autism and Measuring Normal

Activism/Advocacy, , , ,

Even though people described me as in my own world as I was growing up, I was in the same world as every other human being. I could not help it that other people could not see the details of the world such as the sun sparkles and the misty tails rising up from the ground early in the morning like I could, but that didn’t mean our worlds were different.

Instead our experience of the same world was different. My experience was much more detailed because I had ever so much more to see than most people. I could also hear in a much more robust way than most people. In fact, my sensory experience of the world in general was always to a much higher refinement and greater impact than others report.

If we used my experience as the norm then all the typical people would come up as very lacking. But we do not measure experience from the most to the least sensory quantity or quality perceived. Instead we measure according to what most of the people perceive and label that as normal. Then, any experience that does not fall into this normal range of experience is labeled abnormal and people with this abnormal experience are said to be lacking.

If the truth were told, whenever the neurotypical yardstick of normal is used to measure me I do not measure up to be very many inches. (Endow, J., 2009a, 2009b, 2013) Because there is not a good way to measure the things that make me be me those things go unmeasured. Instead I am measured by the yardstick of what makes you be you and am found to be lacking.

Deficit based language in the field of autism is used for diagnostic purposes. A diagnosis is important in many regards because it can provide access to accommodations and supports, needed services and even a disability income and health insurance in adulthood for those who need it. The problem with deficit-based language comes when we take that deficit language out of the diagnostic arena and start using it to describe the humanity of a person with autism.

It is true that autistics are not like neuro majority folks and that when measured we often land outside of the majority norm. Geniuses land outside of the majority norm, too. Landing outside of the norm does not equate to mean less than as a human being.

Personal Questions for Self-Reflection:

  • Do you confine the use of deficit-based language to the diagnostic arena of Autism Spectrum Disorder?
  • How do you think about what is normal and what lies outside of normal?
  • Do you want or need to change your thinking?

When autistics are treated as equal human beings positive relationships are more likely to develop. This is important because people with autism are generally able to learn new things and to access their highest level skills and abilities in the context of a positive relationship. (Robledo, J. & Donnellan, A., 2008).

And yes, we actually have research to show this – quite sad to need to “prove” autistics respond to positive relationships just like other human beings. Just the idea that this research needed to be done is a reflection of the world’s continuing erroneous presumptions about autistics. Hopefully, research like this will help change the faulty perception of the world about autistics.

Personal Questions for Self-Reflection:

  • In your heart of hearts do you think of autistics as equal fellow human beings? If you are not pleased with your current thinking know you can change it.
  • Do your relationships with autistics have a level of shared high regard for one another? What evidence do you have to support this?

In conclusion, please don’t allow yourself to write off autistics as “in their own world.” This only encourages division – an us-and-them dichotomy – when, in reality, we are all in one shared world. Autistics tend to experience the world with a higher degree of sensory awareness and often interact with or guard against the impact of this experience by employing behaviors that can look different or unusual to those who don’t share the autistic sensory experience.

Saying that someone is in their own world tends to give permission to disregard that person and to invite others to think of him as less than other human beings. When this happens everyone loses, including you. So, if you talk about a child, teen or adult autistic as “being in his own world” will you please stop?

IMG_4542

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.

OTHER REFERENCES

Robledo, J. A. & Donnellan, A. M. (2008). Properties of supportive relationships from the perspective of academically successful individuals with autism. Intellectual Developmental Disabilities. 46 (4), 299-310.

Originally written for and published by Ollibean on February 18, 2016.
To leave a comment at the end of this blog at the Ollibean site click here.