Tag Archives: neurology

Autism and Public Perception

October 13, 2015Activism/Advocacy, Social Considerationsautism, autistic, autistic experience, employment, neurology, transitionadmin

Today we have added something to our public perception of autism. Historically that perception has been one of an isolated small child rocking or head banging, oblivious to the rest of the world. Even though that perception is wrong, it is the public perception. There is an addition to that perception in the past few years. It seems society has added an adult image of autism. It is another false image, but never-the-less, quickly becoming an accepted public image of what it means to be an adult autistic. Unfortunately for all of society, that image is of a shooter. Not any shooter, but a mass shooter.

With each mass shooting tragedy, an interesting phenomenon occurs. If the shooter is a person of color we label the event as an act of terrorism. If the shooter is white we pull out the mental health or autism angle.

Most of the mass shootings in the USA have been by young adult white males. Early on in the reporting, when the nation is glued to the news story, autism is questioned. It seems to be the new favorite buzzword of news reporter’s sense making of mass shootings by young adult white males.

The fact of the matter is that of the almost 50 mass shootings in the USA in recent times almost none of the shooters were autistic. Even so, the public perception that shooters are autistic has been developed. The way this happens is that early on, when we are all paying attention to the news on the newest mass shooting tragedy, the autism question is raised. Then, several days later, when most of us are no longer closely following the story, the fact that the shooter was not autistic surfaces.

Because autism was connected early on in the reporting of shootings, it sticks in the minds of the general public. Even though it is not true it has now become pseudo public knowledge and therefore a generally held societal belief that mass shooters are autistic.

I realized the public image of adult autistics as mass shooters has taken hold because of the following things that have happened recently in my life:

In two separate school consultations in the past 6 months school staff have expressed concern that their particular student would become a shooter. One student was a fourth grader who had a behavior of dropping to the floor while screaming and crying. The other student was a seventh grader who pushed his books off his desk and yelled, “no” in response to becoming overwhelmed. I have been an autism consultant in schools for many years. These behaviors are typical results of disregulation in students with autism. When sensory diets and visual supports are put in place the behavior typically subsides. Never before in all the years I have consulted have school staff voiced concern that students with these sorts of behaviors might become a mass shooter.
I was told by an acquaintance that I could become the next mass shooter because I am autistic. This person went on to tell me that everybody knows autistic people do not have empathy and therefore have no feelings for others. I was told that it is impossible for me (or any autistic) to be a caring or compassionate person and therefore I could be the next mass shooter. This belief is wrong. The facts are autistics do have empathy and do have all the same feelings other people have. Most of the time autistics experience feelings so intensely it causes an emotional shut down. Unfortunately, when John Q. Public holds an erroneous image of adult autistics as shooters, all the facts in the world do not change his belief that he now considers factual.
An autistic acquaintance reported her eight-year-old autistic son woke her up in the wee hours of the morning very upset and crying. He expressed fear that he would shoot people when he grew up because he was autistic.
A Facebook hate page popped up called Families Against Autistic Shooters. Petitions were signed more than once in attempts to get Facebook to remove the page. Once it was removed it took but a few hours before it was again up and running. Here is a link to a story about this https://www.yahoo.com/health/internet-rallies-to-remove-facebook-page-linking-013122755.html

It seems our society has adopted yet another false belief around autism. I am quite concerned over how this might play out. We are living in a time when we are in need of putting together increasing numbers of transition programs that include housing for our young adults needing that sort of support. What will this mean in terms of employment and housing opportunities for our young adults on the spectrum?

Even though this has untold impact on autistic people themselves, it is a larger societal issue. As there become more and more supposed reasons to shove autistic people out of their rightful place in society please know that this sort of set up, if allowed to continue, will short change all of society. Autistics may need supports to live in this world AND autistics have contributed mightily to our modern society. We would not be using many modern inventions, electronics, medical advances, and technology if it were not for the contribution of autistic people over history. Society cannot afford to squelch the contributions of autistics alive today or of those who will be born in the future. To do so would be like cutting off our nose to spite our face.

Therefore, I encourage all people who fashion themselves to reasonably intelligent not to swallow hook, line and sinker, the assumption that shooters are autistic. It is false and it will only lead to you developing an unfounded fear. Whenever fear of an already marginalized group occurs history has shown that the results are horrific. Please do not be part of society going there. You can inform yourself.

If you want to read about the history so as not to repeat it check out Neurotribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman.

If you want to get a true picture of what autistic people are like and you have an aversion to finding out from actually autistic people, please read Uniquely Human: A Different Way of Seeing Autism by Barry Prizant.

Both books were released late summer of this year.

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 12, 2015
To leave a comment at the end of this blog on the Ollibean site click here.

Autistic Patterns of Thoughts and Emotions

September 30, 2015Activism/Advocacy, Growing Up Autisticautism, autistic experience, Diversity, first person account, neurologyadmin

I use the movement of things outside of me for purposes of thinking and of processing feelings. Recently, autistic friends have let me know that most people in the world do not do this and that it is a rather common autistic experience. I have no idea how common so would very much appreciate autistic weigh in here.

Thinking
My thoughts are all in colors and pictures. Usually there are sounds attached, but not always. To think I need a way for the colors and pictures to move. When my sensory system is calm and integrated the thoughts sometimes move on their own accord. When my thoughts are not moving or moving too slowly I simply borrow from the archives. This means that my words come from something previously thought about and stored. I just pull from the archives and run the script. Sometimes I wonder if this is simply a form of echolalia.

When I am a little bit disregulated I am able to pull from the archives and run the scripts, speaking aloud their words, pretty fluidly. I doubt most people realize the thoughts are not original, but instead historical. As I become more disregulated I have higher probability of pulling something from the archives that isn’t a particularly good match for the current conversation. I also have an increasingly narrow swatch of the archives available to see and pull from. The best match from the limited swatch is at best not relevant and at worst downright offensive to those around me. It is one reason why I work hard at staying regulated – I want the lowest probability of unintentionally offending friends and co workers in my day to day life.

Emotions
My emotions are also in colors and pictures, sometimes with sound and always with a high degree of movement. The more intense the emotion the more patterned the movement of colors and pictures become. Emotions that arise from interactions with others can get really big really fast. The colors and movement pattern of the emotions are infused with snapshots of the current situation. As the pattern of color movement happens, portions of the snapshot are stretched and highlighted. When the emotions are positive the stretching and highlighting of the snapshots are generally either amusing or very beautiful. When the emotions are negative it makes the snapshots look similar to horror movie scenes with grotesque exaggerations.

The visual emotion scenario my brain creates runs in a predictable sequence over and over, each time through with an increasingly vividness. Thus, a good and positive sequence can become quite nice and very relaxing and generate soft feelings towards others that are in the pictures, while a difficult or negative sequence becomes more and more horrifying as the loop recycles over and over. This is how I experience emotions.

The Patterns of Thoughts and Emotions
Besides my thoughts and emotions being comprised of colors and pictures and their sounds and movements they also occur in the context of unlimited patterns and combinations of patterns. I do not have control of the patterns any more than I have control of the colors, pictures, sounds or movement. Or perhaps it would be more accurate to say I am unaware of any control. I am always hopeful that one day I will be able to exert control over some of this internal thinking and feeling process as I imagine that would make for an easier time interfacing with people around me.

The patterns are important, because whether in thought or in emotion, that is where I can impact a change. When I have a friend who will listen to my thoughts or is willing to hear the same patterned emotional story, after several times through I can latch onto something – usually a snippet of color or movement that comes with their words – that becomes helpful in breaking up the pattern and heading towards a new or different pattern. Practically this means I am able to shift an emotion or incorporate new words or ideas into my thinking.

Most of my friends are not able to hang in there beyond the second or third pattern repeat. If it is a thought pattern I am attempting to repeat they stop me and tell me I have already told them my views. Sometimes I am perceived as stubborn and controlling because I am saying the same thing over without incorporating their ideas. This makes them feel like I am talking at them rather than with them about the topic at hand. As soon as I recognize this I stop, but typically the damage has already been done in terms of how people view me.

When I am in the midst of an emotion pattern I repeat the visual loop I am seeing over and over. My friends report they feel they are not helpful as I am just repeating myself and not taking their words into consideration. They tell me they feel they are wasting their time because I am not listening. Typically, they walk away in frustration.

The Resolution of Difficult Thought and Emotion Patterns
Most friends are not able to be helpful to me in interrupting my negative thought or emotion patterns only because they do not see that sticking with me while I replay the pattern might be helpful. Most friends seem to need to be able to make a positive impact the first time through. Really good friends allow a second or third round of my repeating pattern, but then do not see any benefit in continuing on in a cycle they seem unable to be helpful in altering.

Because people are generally not very helpful to me in changing the patterns of negative thoughts or emotions I have other ways that are helpful. All of the helpful things for me involve some sort of movement outside of me that has either nature sound or no sound attached to it. When I put myself in these contexts I allow the thought or emotion pattern to run repeatedly until some element of movement outside that pattern presents itself in a way that my neurology can latch onto. Once this happens, the thought or emotion pattern can start to change. Sometimes this can happen in a few hours, but most of the time it takes several days. It is hard work. There are a few thought and emotion patterns that I have been trying to interrupt and change for years.

If I do not have lots of energy I find it helpful to be outdoors. Sometimes going for a walk, other times just sitting outdoors in solitude watching the patterns of nature is helpful. Eventually, something in nature’s pattern will hook into the thought or emotion pattern and effect a positive change.

If I have more energy I can read a book or engage in creating a work of art. This allows for the same result of something in the pattern of the reading or the act of creating to hook into the thought or emotion pattern to effect a positive change.

The interesting thing about this is that generally I become cognitively aware before my thought or emotion pattern changes. For example, if I misunderstood something with a friend that produced a negative emotion pattern and then discuss it with my friend, I will cognitively understand my friend’s perspective before I am able to interrupt the emotion pattern.

Practically, this means that even though I understand my friends words and the words do inform me that the pattern I have running is now faulty, my neurology will continue to repeat the pattern and to be experiencing the negative upsetting emotions until some movement pattern outside me can interrupt and change that internal pattern. My friends sometimes interpret this as me not being able to take their perspective. I know it looks like I am stubbornly hanging onto my false take on the situation even though my friend has told me their take on it. It is exasperating to them. It is to me, too.

Even though I understand their words and their perspective the pattern of thought or emotion is still running. It is more dominant and powerful than I care for it to be and I am not able to will it away. Believe me, I’ve tried! Instead I need to work with it by finding some other movement to hook into that will serve to interrupt and change the pattern to match my newer cognitive understanding.

Here is a poem from my childhood that illustrates using a movement pattern in nature to be able to think about my thoughts from the day. When the pattern of nature’s movement was over, so was my ability to continue thinking. At the time I wrote this poem I did not have the words to explain it further than the words of the poem. Today I have this blog. That is progress – slow – almost 50 years in the making, but progress in understanding my own autistic neurology! (Note: I no longer see myself as an alien on this planet, but did back then.)

Dog Walk Air Colors

brown, soft hush puppy skin folds swaying too and fro
as short legged clippety-clops echo off the sidewalk

the pink-yellow air of a going down sun
allow the girl and the dog forward walking room
into the future

by providing a reliable unchanging pattern of air color rhythm
every night after day, every day after night
predictably reliable over and over, again and again

the girl lent the air colors a space inside her
adopting the yellow-pink air
along with it’s early-time night of lavender-blue
to herself

then…
tying the dog by his house she went back inside her alien self
to hide from a world she didn’t belong to and was not a part of

but one from which she could see and borrow dog walk air colors
to become for a moment something bigger
than the alien girl that she was

– Making Lemonade: Hints for Autism’s Helpers, pg. 100

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.

Uniquely Human Neurotribe

September 10, 2015Activism/Advocacyautism, autistic experience, Diversity, neurology, sensoryadmin

This past summer two new autism books were released within days of each other. Each, of it’s own accord, is a game changer if readership becomes large enough. Together the two books could serve to alter the course of autism history in terms of who is given the stage to tell the autistic story.

Neurotribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman does exactly what the title says – lays out lots of history. There are so many interesting parts that I never knew existed that have impacted what we believe we know about autism. Even though the book is quite large – over 500 pages – there are lots of parts that got left out.

I am hoping for a second volume, perhaps titled something like Neurotribes; The Left Outs because through all of the history of autism there have been the many factions of “left outs” when it comes to autistics. Historically, all autistics have been left out of humanity – not considered to be human beings as so succinctly put by Ivar Lovaas in an article he wrote for Psychology Today.

He [Lovaas] explained to Psychology Today, “You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense – they have hair, a nose, and a mouth – but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.’

– Neurotribes, page 285

Understanding the history of the shaping of societal attitudes is important. It is the reason for where we are today. At this point in time society generally regards parents of autistic children and professionals serving autistic children to be the experts about autistic life. Autistic adults are disregarded. We have been and continue to be told we are either too autistic to possibly know or not autistic enough to possibly know what it means to be autistic. It is time – past time – to change this dynamic!

The trouble is that even though autistic people have been speaking, writing, making films, screaming, politely talking, arguing, pulling out hair (self and others) and employing all behaviors possible to get the world to hear very basic things about our own autistic selves such as:

we already are human beings
we have feelings
we want friends
we have empathy
etc, etc, etc.

– even though numerous autistic adults have been saying these things for ever so long we are NOT heard simply because society has adopted the view that autistic people cannot and do not have the authority to reliably speak on topics having to do with anything autism related, including living the autistic life.

Enter Uniquely Human: A Different Way of Seeing Autism by Barry Prizant! If you are autistic and read this book you will immediately recognize the word “different” in the title is meant for everyone NOT autistic. Those in our tribe (along with those rare humans who stand with us) already have known what others will come to tout as “a different way of seeing autism” our whole lives. Besides knowing it, we have also been saying it over and over and over for more than forever it seems already! But society has not heard in a big enough way to make an inroad, to make a difference in the way autistics are thought to be, and as a result, treated by all factions of our modern society.

Here is what I posted on Amazon for Uniquely Human on September 2, 2015:

Reading this book was like a breath of fresh air! The author explains autistic reality for what it largely is – employing solutions to make living in a world mismatched to our neurology possible. The reader has ample opportunity to shift his own place from which he views autistic people.

Societal norms have determined that an autistic life is one lived from the view down under, meaning the majority norm is the unspoken attainment of passing that autistics are meant to strive towards. Professionals often congratulate themselves when they have taught their autistic clients enough skills so they can appear “indistinguishable from their peers” regardless of the price paid by the autistic to maintain this indistinguishability.

Thank you Barry Prizant for pushing the envelope towards that future day when society might view autistic people as sharing their world (rather than in our own world, often othered and living down under society’s “normal”). Thank you most for already seeing us in that way.

Having Uniquely Human hit the shelves along with Neurotribes may have the impetus to change the status quo. Because neither author is autistic they will automatically be publicly heard over anyone autistic and over a collective of autistic voices when it comes to the autistic life. For once – this is a good thing! It is good because both of these authors say the things autistics have been saying for a long time already. I am hoping these two books pave the way for society to collectively begin to see that autistics really do know about living the autistic life – that autistics are the experts on what it means to be autistic.

Steve and Barry – Please team up, get out there and turn the tide. Thank you so very much for counting us already human and for understanding why the rest of the world most often does not. As autistics, we cannot change this status quo. Because you are NOT autistic you have that chance. Do us proud.

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 September 9, 2015. To leave a comment at the end of this blog on the Ollibean site click here.

Autism, Transition Programs and the Impact of Poverty on Self-Advocacy

September 5, 2015Activism/Advocacy, Social Considerationsautism, autistic experience, Diversity, first person account, neurology, transitionadmin

I am an autistic woman who has lived both in poverty and as a middle-income person during my adult life. I am noticing how self-advocacy is typically geared toward middle-income status. This could be problematic since many autistic adults live in poverty. Based upon my experience I have come to realize that middle class self-advocacy works fine if in fact you are a middle-income person, but doesn’t work well if you are a poor person.

I will explain this more using an example from my life as a poor person versus a middle class person.

Dental Experience as a Poor Person

I once had to live on pain pills for six weeks with infected wisdom teeth because no dentist in my area took the state medical insurance poor people rely upon. My only recourse was to visit the hospital emergency room every third day to get narcotics. Finally, the county health nurse found a dentist that would take me.

I had to go off narcotics to drive over an hour to the place that had an opening for a state insurance patient. It was summer so I had my kids along – all grade school age. After using money I had been saving for back-to-school supplies for my children for gas to drive to this far away appointment, they wouldn’t see me because of their policy of no unattended kids in the waiting room.

I had to put off paying a household bill the next month so as to have gas money to repeat the trip to this out of town dentist and have money to pay a babysitter. During the appointment I got scolded and told it was irresponsible for having waited so long to get in for care. It took several months to get rid of the tooth infection that had taken over my body. State insurance is great in theory, but not always in practice.

During the six weeks of visiting the emergency room to get narcotics every three days I got reported to child welfare for suspected drug abuse and thus suspected of not being able to take care of my children. I also was reported to the welfare department because I was drug seeking and avoiding employment as evidenced by repeatedly asking for a medical work excuse. I actually was attending work as I couldn’t afford not to, but needed the work excuse for my college field placement (not even paid work!) as I wasn’t able to manage both paid work and the two days per week field placement.

Dental Experience as a Middle Class Person

Recently, I began experiencing dental pain. It is now several years later, my children are grown and living on their own, I have graduated from college (twice in fact – undergrad and then later, a master’s degree), run my own business and work part time for a non-profit organization. I no longer have the state medical insurance meant for the poor and disabled. I now have regular health/dental insurance that working people can purchase.

Being a middle class person and having middle class insurance made all the difference in how I was treated. I was able use a list of insurance policy approved providers to find a dentist close to me who could see me that very same day. I did not need to go for several months resulting in the last six weeks of needing narcotics for unbearable pain from untreated infection.

While in the waiting room, I observed a mother coming in with a preschool youngster. The mother explained to the receptionist that her babysitter had canceled so she needed to bring her 4 year old along, but the child was well able to entertain herself and could be trusted to stay in the play space area when she was in the dental chair. The receptionist replied that she would keep an eye on the child while the mother was in her appointment saying there wasn’t too much anyone could do when no child care was available.

It is easy to see the differences in my two dental experiences. Initially, I thought it was due to the type of health/dental insurance I had – state insurance issued to the poor or insurance purchased by a working person – but instead, upon closer contemplation, I came to see that even though type of insurance played a role, a bigger factor was societal attitude toward people using the state insurance. Poor and disabled people use an insurance that not only reimburses dentists and physicians at a lower rate than other health insurances, but also invites the attitudes and assumptions about the poor and disabled to surface. Poor people are thought to be lazy, irresponsible and with all sorts of personal character flaws.

I used the same self-advocacy skills in each situation – clearly asking for what I needed, giving supporting reasons why my request was valid. I was clear, calm, polite and rational in all of my transactions. This set of skills served me well as a middle class person seeking dental care, but failed miserably in terms of outcome when I was a poor person. I believe the main reason middle class self-advocacy doesn’t work as well for poor people is due to society’s perception and attitude toward poor people. Based upon this, I am now wondering if we need to rethink self-advocacy in the field of autism.

Is there – (not should there be because of course there shouldn’t be) – Is there such a thing as self-advocacy skills based on economic class?
Are we teaching middle class self-advocacy to a group of people who, due to their disability income, often are poor once they reach adulthood?
Will the self-advocacy skills we teach our youth today serve them well in their adulthood?

I have these and many more questions, but no real answers at this point in time. I am raising the issue in hopes of starting a conversation and inquiry into this matter. We live in an era where transition programming for teens and young adults with autism is very much needed. As these programs are developing we need to be mindful of the potential impact of teaching middle class skills to individuals who may live in poverty during their adult life.

It would be wonderful to change societal attitudes, but that takes generations. It would be wonderful to change the poverty factor for those living with disabilities, but we live in a political time where decreasing income, programs, and all sorts of helpful things for disabled people have become the norm. So, in reality, it would likely be more expedient to change the way we teach self-advocacy. Even though it would be politically incorrect to have two classes in the same transition program –

Self-Advocacy for the Poor and
Self-Advocacy for the Middle Class

– it would likely be practically helpful since a huge part of self-advocacy is learning to interface with society.

I think someone needs to figure out self-advocacy for poor people because it must be something very different than self-advocacy for middle class people. When poor I did the same self-advocacy, but it was seen as being a leech, mooching off the system, expecting something for nothing, wanting free handouts and being too lazy to work. It was assumed I was drug seeking and my ability to parent was brought into question.

Of course, this is morally wrong! We cannot run two classes in our transition programs – Self-Advocacy for the Poor and Self-Advocacy for the Middle Class. If you think about it a bit, it really doesn’t make sense that we need to come up with content for a Self-Advocacy for the Poor class. What would be different in the curriculum? Why does clearly asking for what is needed, giving reasons it is needed, in a clear, calm and polite manner be the skills needed for middle class people and yet, those same skills not work for poor people?

At the end of the day, it is what it is – society interfaces with poor people based upon an entirely different set of assumptions and resulting behaviors than it does when interfacing with middle-class people. Societal attitude affects outcome of employed self-advocacy skills. Poverty affects self-advocacy outcome.

Note: This essay uses sarcasm. It proposes something – Self-Advocacy for the Poor – something the author really does not believe in as a way to get people to think about the bigger picture – that of societal differentiation of treatment for the poor versus the middle class based on negative stereotypes and assumptions. Please consider what impact that may have for poor people when teaching self-advocacy in transition programs. Ultimately, think of the impact on autistics using self-advocacy and that economic status plays a big role in outcomes when an autistic (or any person) employs self-advocacy strategies.

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 September 4, 2015. To leave a comment at the end of this blog on the Ollibean site click here.

Visual Accommodations and Blessings of My Autism

August 21, 2015Activism/Advocacy, Autism and Aging, Sensory Solutionsautism, autistic experience, employment, first person account, movement, neurology, sensory, transitionadmin

The visual sensory aspects of the way autism plays out for me most of the time means that I get too much information delivered – things are too big, too bright, too bold – typically too much to endure all day. Practically, this means I need to accommodate my sensory system in a variety of ways.

Let’s take but one example from my life where visual overload is a pretty constant problem. Here are some things I have found helpful:

Environmental Accommodations for Overhead Lights

Most of the time I simply do what I need unless it affects others. For example, at work I might turn off the overhead light when working on my laptop. I do not need the overhead light and, more importantly, the bright boldness of it along with the electronic buzz and the visual fallout (looks like sparkling dust fireworks in the air – like a constant private fireworks show of sorts). I have an office mate so need to take into consideration her need to see what she is doing so sometimes it doesn’t work well to turn the light off.

Because turning off the overhead light isn’t always an option, I have a light cover that magnetically attaches to the frame of the overhead ceiling light. It is there at all times. It cuts down on the visual fallout from the light and cuts some of the brightness. This means I can endure it for a longer time, which is a good thing at work because I can be more productive.

I have also found that I can make other environmental adjustments that, while they are not directly targeted for my visual sensory overwhelm, they turn out to be helpful. This is because every sensory difficulty I have in my body adds up. Think of adding water to a glass. Each sensory difficulty adds a bit more water. While each bit of water by itself will not make the glass overflow, when they are added together it can cause the water to overflow and spill out of the glass.

Other things I pay attention to in the sensory department so as to prevent sensory overwhelm have to do with seating. I do not have a stable proprioceptive sense. This means that I always need to pay conscious attention to sitting in a chair. If I sit in a chair with arms I have to devote less attention to monitoring my body in the chairs. If there are no other people around to see me I use another chair for a footstool of sorts. When I have the back of my legs touching a hard surface and arms on the chair I am sitting on I need to pay very minimal attention to sitting in the chair. I can really concentrate and get some serious work done! This is because I get the most proprioceptive feedback about where my body is located so I do not need to consciously track it.

If I have the right chair and my legs touching another chair I have more energy to deal with the overhead light assault than if I am sitting in a way that doesn’t support me well. And conversely, if I do not have the overhead light on I have more resources to devote dealing with sitting in a chair that doesn’t support my unreliable proprioception.

There are several more environmental factors that I can adjust, but using these two examples serve to illustrate the example of how to make sure I do not fill up that glass with water too full. It is important for me to understand all the various environmental things I can adjust. This often is dependent upon my various work tasks as they have different locations and different combinations of people and require different sorts of input from me. This means some times I can make environmental adjustments and other times I cannot. I do the best I can to remain productive for the maximum amount of hours while at work.

Daily Evening Sensory Integration

One of the things I do to maximize my productiveness at work is to make sure my sensory system is in top shape before I walk out of my house each day. This takes some planning, but it is entirely doable. It is the deal breaker for me because even if I can employ all the environmental accommodations I need at work, I still will not be able to be productive the whole day if I do not do my homework so to speak.

One of the things I do is to make sure I have several hours of quiet time the evening before a workday. For me this means no electronic sounds (something very wearing on my system). I do not listen to music, watch TV or use any other device that emits sound.

In addition I must rest my visual system. This means I cannot read email or articles on line that require scrolling during my couple of hours of evening down time. What has really helped me immensely is using my phone for email. I can open the email and if I can read it all on my phone screen I am able to answer it. If the email requires scrolling I don’t even read it, but save it for when I am at my desk. Since I have figured out that the scrolling is the problem with email I have become more efficient with keeping up with email because I can do all the non-scrolling emails anytime and save the scrolling emails for later. This allows me to be productive during my sensory down time in the evening.

I go to work where I have an office 2-3 times per week. The rest of the days I work from my home office or travel for my consulting business. Regardless of which work I am doing the next day, I must have the couple of hours of sensory down time the evening before. When I do not have this I start the day at a disadvantage. It is like starting with my glass already half full. This means I will be less productive from the start. My livelihood depends on me being able to take in information from multiple sources, think it through quickly, adding in my understanding and knowledge and sharing reasonable recommendations in real time – on the spot. I cannot afford to start out with any water in my glass!

Daily Morning Sensory Integration

Another thing I do to make sure my sensory system is at it’s best, enabling me to be and do my best during the work day is I set my alarm for 2-3 hours before I need to leave the house in the morning. I need this much time for sensory integration along with getting ready for work. Activities that are helpful change over time. At this point in time I am walking for at least an hour each morning. I sometimes include stretching exercises.

Daily Weekly and Monthly Sensory Integration

I additionally employ other sensory strategies in a mix that serves my needs. Massage, deep pressure of water in swimming pool/hot tub, pressure clothing, weighted blanket and various exercise routines have all served me well at various times. This means I sometimes use a gym or a YMCA pool. Other times I do various workouts at home. I also make appointments for massage and own pressure clothing, weighted blankets and therapy balls available for use.

I hope by sharing some of my personal examples others will be encouraged that it is entirely possible to figure out what your sensory system needs to be a high quality, productive worker. It does take work and diligence, but for me, it is something that can be done.

Daily Blessings

I also want to mention that there is a silver lining so to speak. Even though my sensory system gives me lots of difficulty and takes several hours each morning and evening to stabilize along with accommodations all day long, there is a positive side too! I have recently found out that not all people see the everyday things that I am able to see. For example, each day I see airwaves. I see the outdoor air moving in undulating waves. This movement is the result of all things in the atmosphere – heat, light, moisture, wind, etc. I know from having lived a long time that certain sorts of airwaves mean that sunsets over the water will look a certain way.

Yesterday I knew, based on the air waves I could see during the day, that the sunset over the lake would include a wide vibrant solid red swatch across the horizon. This doesn’t happen very often. I planned my day accordingly so that I could be at the lake for sunset. Being able to “read” the airwaves I see allows me to know when to be where to take beautiful pictures. It is one of the blessings of my autism. Here is a picture of last night’s sunset.

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 17, 2015
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