Category Archives: Autism and Aging

Using Autistic Strengths to Make Friendships Work

July 15, 2015Autism and Aging, Hidden Curriculumart, autism, autistic, autistic experience, Diversity, first person account, neurologyadmin

I am an intelligent autistic woman. I manage my own business, have raised three great kids and interface with the world around me with a fair amount of success. Not too shabby considering I lived in an institution as a kid, was homeless as an adult and used public assistance for some years.

Today I am content in my life. It is intentional. I have decided not only to be content, but how to intentionally let go of some things that used to bother me. I hope to get better with this over time because it is great feeling content most of the time and I would only like more of this good thing in my life!

Last week I was at a get together with a few of my closest friends. I think it is fair to say all of us in the group adore one another. None of us would ever intentionally say anything hurtful to any of the others. I know this without needing to wonder or question it. These particular friends would go to bat for me if I needed it. They are people I can count on.

Even though we have strong bonds of reliable friendship and even though these friends understand autism better than most people I know they do not share my autism neurology. Thus, just like I see the world through my lens of autism, they see the world through their lens of neurotypicality. This isn’t good or bad. It just is. We all see the world through our own perspective.

In this group of friends I told the story about a Facebook post from last winter. Just looked up this post and here is a screen shot of it.

Initially I had just posted the first line. Within a few minutes I received a phone call about my post. Once I explained I was told I had better put the explanation on Facebook because “Can’t screw worth a darn and then the rubber broke” has a totally different meaning for most folks. As soon as I heard this I immediately knew that different meaning! I hurried to Facebook, deleted my original post and then reposted with the meaning attached. And that is why last week, when Facebook came up in conversation, I told my friends about that Facebook posting – it was funny!

After hearing the story one of my dear friends said that everybody knew I was smart enough to have understood what those words meant when I posted them. In the moment, it felt awful to know my friend didn’t believe me and, like usual when a too-big emotion is triggered, I shut down and did not have any words. It took a week for me to be able to share that I really did have only the literal meaning of the words when I first posted. And yes, once reminded, I did know the social meaning.

Understanding social meaning has nothing to do with level of intelligence (Myles, Endow & Mayfield, 2013). It has to do with how my autistic brain works. Literal is my first language. My brain automatically does business in the literal mode. I must translate into social meaning because my brain does not automatically pick up the alternative (to literal) social meaning. In fact, I developed a strategy called Pause and Match around this and if you are interested you can read about it in Learning the Hidden Curriculum: The Odyssey of One Autistic Adult (Endow, 2012). I don’t always take the time to translate simply because I don’t always know which words are in need of translation.

It turns out everyone else has a shared social meaning for “can’t screw worth a darn and then the rubber broke” and it was nothing like my literal meaning! Once I am aware of the social meaning I can laugh at the funny picture people made when they interpreted my literal remark with a social meaning. And that is why I was telling this story – the literal/social play on words made it funny.

At this point in my life I am able to inhibit most mannerisms of autism when in public. People tell me I no longer look autistic. Even so, I am autistic. I have an autistic brain. It is hard to hide my true self all the time, but doing so has given me opportunities. One unintended effect is that people sometimes make assumptions about me when I make social errors, assuming intentionality (and sometimes rudeness) because after all, they think I am smart enough to know better (Endow, 2013).

When this happens I try to remind myself that just as I see the world through my autistic neurology so do my non-autistic friends see the world through their own non-autistic neurology. If my hurt feeling was caused by no ill intent on their part I determine to let it go. Just like people cut me some slack, I can cut my friends some slack.

Sometimes, at a later time, I might bring up the situation and explain the whole idea that intelligence has nothing to do with social understanding because I believe it is important for people to understand this concept. I especially do this if I experience a reoccurring hurt feeling over the incident. Because my emotions are often huge I can have a difficult time reigning in a too-big emotion, even if I cognitively understand that the situation wasn’t as huge as the ongoing recurring emotion – again nothing to do with intelligence, but in this case everything to do with my autistic difficulty in emotional regulation.

One thing that helps me is to think of something positive and meaningful that I admire about the particular person. I get something to concretely represent the positive connection I had with this friend during our time together when the too-big negative emotion was triggered. Sometimes I get an actual object. Other times I create a piece of art. For me this concrete art object solidifies the positive connection, making it bigger than the negative hurt feeling.

Then, each time the hurt feeling surfaces I look at the art work or object – either in real time or in my mind if I am not home to actually see it. Seeing a concrete object of positive relationship representation each time my brain replays the hurt feeling, after several instances, allows the positive feeling attached to the concrete object to become larger than the negative feeling that is not attached to something concrete. It is one way I have found to work with my autistic literalness in a positive way that serves me!

Once the hurt feeling has diminished I sometimes give the object or the art to my friend. This means that I no longer need it. Sometimes I explain my hurt feeling and how it is no longer there. Other times I do not. The giving of the object helps solidify the feelings of positive regard and caring I have towards my friend.

All in all, friendships are wonderful. Autistics want and can have friends. I have found it helpful to work with my autistic neurology rather than to try to make friendships work for me in a neurotypical way – the way that most social skills and friendship groups are taught.

I have learned over time that it is a plus to be able to use the strengths of my neurology to handle the huge negative feelings that get triggered in friendships only because we view the world differently – each of us having the point of view delivered to us through the lens of our own neurology. We all have to find our way in making friendships work. Good friends are important. We all want and need meaningful relationships. And in this way I am more like the rest of humanity than my autism can ever make me different!

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 July 13, 2015.

Autistic Burnout

July 7, 2015Activism/Advocacy, Autism and Agingautism, autistic, autistic experience, Diversity, employment, first person account, movement, neurology, sensory, speech, transitionadmin

Each individual who has an autism spectrum diagnosis got that diagnosis based on deficits. That isn’t good or bad, but rather, simply the way diagnosing works. Diagnostic deficits are based on the social and expected norms exhibited by the majority of people. Deficits are determined by a significant deviation from this majority norm. And, if you deviate far enough from the norm you get a label. If you have a group of deficits that line up with the autism spectrum disorder label then you get that label.

Once an individual has the autism label, we begin teaching skills to overcome the deficits. This is based on a societal assumption that it is important for all human beings to look like the majority of human beings. We call this look “normal.” It is expected that every human being look as close to normal as possible. It is further expected that all people who don’t look or act normal very much want to look or act normal. Hence, with this mindset, it makes sense to teach skills to overcome diagnostic deficits.

I have nothing against learning new skills that allow me to look like the majority of the people on the planet even though I am autistic. I like being able to converse in an expected manner and to inhibit all my autistic noises so as to keep earning an income. Even though this means I must have considerable down time to stabilize my sensory system every day, I still love being able to make this choice. I consider myself lucky to be able to do so because for most of my life my sensory system wasn’t organized enough to even allow this sort of choice.

However, there is an unintended negative affect that learning new skills is visiting upon me. It seems that a few skills allowed me better abilities to navigate in the world. Then, because I thought if a little bit is good even more would be better, I deliberately set out to learn more. In fact, I learned how to pass in the world as a typical person – to appear as if I am not autistic.

This was wonderful for a while because it allowed me to increase my standard of living. It allowed me to move from Section 8 Rental Assistance unit to a small home of my own. Once my children were grown up, with a new family size of one, I rose above poverty level income.

Then, life got harder each day because of the effort needed to pull off the passing in order to maintain. But, it was also wonderful to not have to constantly worry at the grocery store. It is hard to grocery shop when you live in poverty because generally the more healthy the food the more it costs. It means you can have a few healthy things, but not enough to really have an overall healthy diet. I enjoy eating healthy

But here is the rub – even though I now look “normal” even though I am autistic, it is too exhausting to maintain. I am noticing across my life that whenever I learned a new skill, the bar was set higher and I was, from that point forward, expected to always have that skill available and to use it even if using the skill depleted ongoing large amounts of personal resources.

In my life, because I have been able to learn new skills with the result of looking more neurotypical, I have dug a hole for myself that I cannot now get out of as the bar of expectation for me to look/act “normal” has been raised. I am currently passing in public so well that people often can no longer tell by looking that I am autistic.

I know in the field of autism we have made it our goal to get autistics to look neurotypical as we hold that as the prized norm. Many people congratulate themselves when it happens. I am here to tell you (just as countless others from my tribe have done) that this may NOT wind up to be a good thing for autistic people.

We initially think it to be good because it opens more doors and allows more access to do/be what we want in life. Unfortunately, the unintended negative affect is that it raises the bar for us in all areas that are hard – the areas that got us our autism diagnosis in the first place (communication, social, sensory). Once we appear “normal” we are expected to always appear normal. To do so comes at a great expense. Ultimately, for me, passing as “normal” means that I am now a fake person, never able to be myself without putting my ability to make a living in jeopardy. Because I am close to retirement age I am hoping I will make it.

I am writing about this because I hope people will become aware that what we are currently patting ourselves on the back for accomplishing in the field of autism – making autistics look indistinguishable from their peers – turns out to not be altogether good. We need to do better. Let’s stop patting our own backs and start listening to autistics. The lived experience matters.

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 July 6, 2015

Autism and a Changing Sensory System

July 1, 2015Activism/Advocacy, Autism and Aging, Autistic "Behavior", Sensory Solutionsautism, autistic experience, Diversity, first person account, movement, neurology, sensoryadmin

One of the challenges of autism is sensory system difference. These differences are so prevalent that they are part of the diagnostic criteria for Autism Spectrum Disorder (American Psychiatric Association, 2013). This difference comes into play because an autistic neurology typically doesn’t automatically regulate sensory information. This can happen in a variety of ways and accounts for the sensory difference variation we see amongst autistic people.

Sensory information from the world around us is taken in, processed, stored and retrieved by all human beings. In those of us with autism there can be differences in any, some or all of these areas. This often translates to mean our sensory systems are “on edge” pretty much all the time (Endow, 2013, 2011, 2009, 2006).

To live more comfortably in a world that is not set up with our sensory needs in mind we must learn to bring intentional regulation to our sensory system because our body does not do that for us automatically. For youngsters this means an OT (Occupational Therapy) Sensory Evaluation is often done with the results of recommendations for a sensory diet. What is on an individual’s sensory diet plan are those activities, if engaged in, will help to manually regulate that person’s sensory system. Most older autistic adults have not ever had a formal sensory evaluation, but over time have figured out what sensory regulation modalities serve them best.

Something about autistic sensory difference that I do not see addressed in the literature is the fact that sensory system needs change over time. This is important for many reasons. Here are a few to keep in mind:

When youngsters get sensory evaluations that result in sensory diet recommendations that are actively utilized in daily life they become better regulated. This results in more engagement, increased learning and a happier child. However, over time, implementing the very same sensory regulating strategies doesn’t keep on delivering the same results. This is because the sensory system needs change over time (Endow, 2011).

For example, of the seven items on Madison’s sensory diet in second grade only two of those items serve her needs in third grade. Because four of the sensory regulation choices no longer worked for Madison she didn’t want to engage in those activities. She didn’t have the words or the communication ability to explain why she would push the “no” button on her talker. When I went in to consult the staff expressed frustration because Madison was clearly disregulated and yet, she refused to do her sensory diet, pushing “no” on her talker when offered choices.

Once the staff understood that Madison’s sensory needs had changed, rather than being stuck in blaming her for her lack of cooperation, they got an updated sensory evaluation. With the new sensory regulation strategies matched to her changing sensory system, Madison became more regulated and once again began making academic progress.

It is important for autistic adults to be aware of the fact that their sensory needs will likely change over time. When you think of it, it makes sense because all human beings experience this. When you are autistic and have a very sensitive system that does not often regulate automatically you need to be aware of this possibility and watch for the changes.

For example, Justin (age 52) was in the habit of taking two half-hour daily walks, keeping his TV volume level at 9 and having three hours each evening with no auditory input. This plan served Justin well for almost three years.

By age 55 he found that he had to increase the TV volume to 11 in order to hear it clearly) and only needed one hour each evening with no auditory input. He continued taking two half-hour walks each day.

Then, at age 56, taking walks became troublesome to Justin because his fluidity in movement had become more problematic. After trying several strategies Justin discovered that going back to three hours each evening with no auditory input along with listening to a music track of nature sounds that had a definite beat allowed him to sync his walking to the beat, and thus, was able to continue his two half-hour walks each day without experiencing the movement glitches.

Regardless of age, all autistics need to be kind to themselves when their sensory system changes. It isn’t easy because sensory differences, whether overload, not enough input, distorted input or a processing, storing or retrieving difference – all of it winds up affecting the way we behave.

I haven’t yet met an autistic that hasn’t, at some point in their life, been blamed for bad behavior. We can see behavior. We can’t always see what is causing the behavior. Whenever someone has a history of being blamed for bad behavior they learn to blame themselves whenever their behavior changes – even when the behavior change is a direct result of sensory system difficulties.

When we see the behavior before we recognize the sensory system change we cannot connect the cause and effect dots. For many of us, the learned pattern is to blame ourselves for our bad behavior. Anytime we attribute character flaw or blame to behavior we get stuck in problem solving.

In the above example, I started seeing Justin because he was having problems at work. He worked in an office and had started throwing office supplies. At first he threw paper clips across his desk, then pens and finally, when he threw a coffee cup that broke something, his job coach called me in. Justin’s job was on the line.

It took some time, but in the end we all learned that Justin’s throwing was helping his movement stay fluid and the nature music sound track helped his movement difficulties both at work and during his daily walks at home.

If the change in Justin’s sensory system with the resulting change in sensory diet hadn’t been discovered the outcome could have been very different. Justin could have been fired from his job and his life would have become smaller without work. In addition, he would have eventually needed to cut out going for walks as that movement became less fluid. Clearly, the movement support needed to be in place.

So, whether you are working with an autistic or are an autistic, please know that sensory system needs change over time. Often, your first clue that this has happened will be seen by a change in behavior. Whenever behavior changes the number one rule I have is to BE KIND.

When people are unkind to autistics they tend to assign negative intentionally to the autistic for the behavior and then blame the autistic.
When autistics are unkind to themselves they tend to blame themselves, assign character flaws (which are permanent and unchangeable) and over time become depressed over something that is nothing more than a symptom of their disregulated sensory system.

Whenever you are unkind in response to behavior – either to an autistic or to yourself (if you are the autistic) – you don’t do anyone any favors. Unkindness, blaming, assigned or taken on character flaws all lead to getting stuck in solving problem situations. Sensory system needs change over time. Know this; count on this. Your first clue will likely be something in the behavior arena. When behavior happens, BE KIND. Whether the behavior is sensory related or not it is most expedient to interface our best selves with solutions and positive regard for fellow human beings rather than being defeated by our own unkindness.

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 June 22, 2015

Autism and Visual Detail

June 12, 2015Activism/Advocacy, Autism and Aging, Growing Up Autisticart, autism, autistic experience, Diversity, first person account, movement, neurology, sensoryadmin

Because of my autism I often experience sensory overload. Many times this is painful. I have learned that by keeping my sensory system regulated I can avoid some of the pain. Over time, in the process of becoming more regulated, I have found ways to enjoy my unique sensory system.

One of the things I enjoy is a degree of beauty I can see in many things around me. I don’t think neurotypical people often see the detail I do. The reason I think this is because when I comment about something beautiful I am seeing others often do not see it.

Sometimes my ability to see details that others cannot has gotten me into trouble. As a teen in an institution, when asked if I saw things that others don’t see I responded in the affirmative. This ability was mistaken as visual hallucinations rather than a function of my autistic sensory system. I was medicated in a way that turned out to be quite detrimental (Endow, 2009).

Other times my ability to see details in the world around me allows me to see beauty that others cannot see. One example of that is I can see mist rising up from the surface of the earth and I can see that interacting with light. If you’ve ever been on a lake, early in the morning you can see the mist rise up off the water. I am able to see that interaction of light and water particles pretty much all the time in varying degrees.

Because I have learned that it is not in my own best interest to talk about what I can see I have learned to use art mediums to show aspects of the way my autistic sensory system presents information to me. One of those art mediums is acrylic paint. There is a series of paintings illustrating this concept in Painted Words: Aspects of Autism Translated (Endow, 2013). You can also see these painting at my website www.judyendow.com under the Art Store tab. Here is one of example of this series of paintings called Lake Tail Mist.

It is important to remember not everybody with autism will perceive things exactly the way I do. Even though, as a group, we tend to have unreliable sensory systems, the way it plays out is not exactly the same from one individual to the next. But hopefully, when people look at my paintings they now have another way to understand that sensory perceptions of autistic folks can be different from their own perception of the world.

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 June 7, 2015

Autism and Hiring Help

June 7, 2015Activism/Advocacy, Autism and Agingautism, autistic experience, Diversity, first person account, transitionadmin

I recently moved. It involved working with a realtor, a banker, and numerous other people. Today I am contemplating sorting out what to put into my new desk drawers and have a literal pile of paperwork from various aspects of my moving adventure. As each person representing each faction of moving began working with me they explained what they would do, how they would do it and the expected outcome.

For example, the furniture store guy explained how the sale worked, the ordering and delivery of the furniture and the return policy. I asked my questions which were answered and then signed on to buy the furniture. I have a pile of paperwork outlining all the things he explained along with a credit card receipt for my purchase.

Another example is my realtor. He came to my home and went through everything with me, explaining his services and what he would do to help me find a new home and sell my old home. This pile of paperwork is so big it has it’s own sectioned leather folder, compliments of the realtor!

There are many others who worked with me during the process. I am looking at all the paperwork and thinking about how each person had to first gain my trust before anything else could happen. There are many people who wanted to gain my trust. They too wanted to work with me, but early on during the beginning contact stages they failed to gain my trust. I did not employ them or purchase their product.

In all aspects of moving I have been in charge of whom I chose to help me accomplish what I wanted to accomplish. Today I am reflecting on how different this has been over the course of my life when it comes to people helping me because of my disability.

First of all, I was typically never given a choice of whom I wanted to work with, but instead random people would be assigned to my case. Rarely was I thought of as a person capable of choosing whom I might want to work for me to accomplish what I wanted in my life. Instead I was perceived more like an object that needed to be worked on, a “case” that needed to be assigned a “worker.”

When you are a “case” needing services it means the “worker” is often assigned. This is unfortunate because the beginning process of a relationship isn’t set up to happen. The carpenter who built my screen porch had to establish a relationship with me before I hired her. The first one failed. He did not call me the following week as he promised. The second one succeeded in establishing a relationship and I hired her. Today I have a screen porch. I hired someone I trusted to accomplish the goal I had – to enjoy the outdoors at home without being bitten by mosquitos.

When I was a “case” needing services and a “worker” was assigned, that beginning relationship stage never happened. I never had a choice in who was assigned to my case. That means I never gave the randomly assigned “worker” permission to work with or for me. I was never asked what I wanted in life, but instead was expected to accomplish the goals set for me. Some of the “workers” were really good people and a working relationship did develop over time. Other “workers” were not so good a match for me and if it had been my choice I would not have hired them to work for me. However, when you are a “case” needing services that are managed by a “worker” you do not get to hire that worker.

It is most unfortunate that when I am a “case” I do not get to hire my worker like I got to when building my screen porch. An assigned worker not only puts ME at a disadvantage, but also puts that WORKER at a disadvantage. Having a hiring process for the worker, in my opinion, is important for both parties.

It is in the hiring process the worker gains the trust and permission to work with and for the person doing the hiring. I hired a realtor. He found me a perfect place to live. I hired a carpenter. She built me a great screen porch. These things are important to me, but not as important as being who I am and doing what I want in my life.

So, why is it that a carpenter needed to gain my trust and permission to build me a screen porch, but when it came to building the life I wanted a worker was randomly assigned with no permission from me?

Why was I expected to trust the intentions of this worker before a relationship between us had been established and before I had given that person permission to work with and for me?

It is just as important (and could be argued more important) for those of us with disabilities to hire our help as it is for everyone else who has the unspoken privilege of hiring their help.

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 June 1, 2015