Autism and Non-Fluid Speech

June 21, 2015Communication, Hidden Curriculum, Sensory Solutionsautism, autistic experience, Diversity, first person account, movement, neurology, speechadmin

I am a speaking autistic woman. Even so, I rarely have fluid access to my speech. Often times I have in mind something I would like to discuss with a friend so as to get their thoughts and ideas on the topic, but even though I know what I want to discuss the words are not available as speaking words. Oh, I know the words – they are in my head – I just cannot get them to come out of my mouth at will.

This often poses difficulties for me. One example is when I am with my friends who I consider to be brilliant in the field of autism. Most of the time I am with them for a purpose so we have an already planned agenda with little time for novel thoughts and musings sorts of discussions. We are all busy people in our professional and in our personal lives. Rarely is there time to get together for no reason at all – the times when I am most able to get the ideas in my head out through my mouth in speaking words.

Because I talk – and I can talk a lot – people who do not know me well are unaware of this difficulty.

People can easily see movement difficulties that are physical such as when a person has difficulty getting through a doorway or get stuck in a repetitive movement. However, nobody can see when the movement difficulty is internal such as words that cannot come out as speaking words at the time you wish to say them (Endow, 2013).

Over the years I have come up with several strategies to encourage the speaking words out of my head. The reason I need several strategies to try is that I never know which one might work when and sometimes, even though I try all the strategies, I still have no success. Here are the three main strategies that sometimes work for me to get the ideas in my head to come out as speaking words:

Begin speaking any words. Sometimes this allows the words I really want to speak to hook onto the random words and thus be carried out of my head through my mouth as spoken words. When the strategy doesn’t work at least I get credit for “being social” – an area I can easily get “down graded” in if not putting forth effort.
Use a research article that has some aspect I can use as a launching pad. Sometimes if I can start speaking about a research article that is somehow related to my ideas the ideas in my head can hook onto this and come out of my mouth. When the strategy doesn’t work at least the conversation was about some new and interesting research.
Use written words. Sometimes if I write down the words I wish to speak then, when I am with the person I want to have the conversation with, I can pop up the picture of the piece of paper I wrote the words on and by seeing this in my head I am able to “read” the words as a launching into the conversation I wish to initiate. When the strategy doesn’t work nobody can tell because they cannot see the picture in my head so I do not get “faulted” socially.

I wrote about this last strategy more than twenty years ago. It was first published as a poem in my first book Making Lemonade: Hints for Autism’s Helpers (Endow, 2006). A few years later this one written poem became the catalyst that allowed the words of an entire new book called Paper Words: Discovering and Living With My Autism (Endow, 2009) to be written. Here is that poem. Notice the unusual spacing. The empty spaces represent the pause in time it takes, even when writing, for the next word to come in so I might write it down. As you read please contemplate how internal movement differences might be impacting autistic individuals you know.

Paper Words

Paper words

can be heard;

so speak up ink

and say them!

Speaking words

are burdensome;

they get her

lost and tangled.

So, pen and ink

are her first choice

to voice

what she’s not saying.

When speaking words

two people should

take their turns

to say them.

Start words now

then stop and wait

and listen some

adds up to conversation.

But, starting words

and stopping them;

and seeing faces

is much too much

to keep track of

when having

conversation.

So, paper words

are much preferred.

speak up ink;

now say them!

Listen people

to the ink;

you won’t get

lost or tangled!

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 13, 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

The Hidden Curriculum About Fat

June 1, 2015Hidden Curriculum, Social Considerationsautism, autistic experience, Diversity, employment, first person account, neurologyadmin

Just started another diet. I am determined to lose a little weight so as to be healthier. I know I can do this because I have done it nine times already. Each time I have been very successful, but the only problem is that each time I have lost the very same weight after having gained it back from the previous episode of losing it. I know I am not alone in this constant weight struggle. Lots of people lose a bit of weight only to gain it back again.

Another thing I am not alone in is liking it when people notice that I have lost weight. After all that effort and denial on a daily basis it is gratifying when a friend lets me know she can see that I have lost weight. Just like me, my friends who struggle with losing and gaining excess weight, also like to receive compliments.

Most of my life I have been perplexed over this. While I know my friends like to receive compliments about weight loss, it seems they only act happy some of the time. The rest of the time when I have issued compliments I get a negative response. It turns out there is a lot of hidden curriculum around this topic!

Hidden curriculum refers to all the unspoken social rules that run the world! These are the unwritten rules that are assumed knowledge.

Example: A sign saying “Free Cookies” means only one cookie per person.

The way it is written, it technically means all the cookies are free, so one person could take them all. Because most people know the hidden curriculum it would be unlikely that one person would take all the cookies. But that is where the problem comes in. Those of us with an autism neurology do not automatically pick up the hidden curriculum. It means we often violate hidden curriculum and when we do we don’t even realize it unless someone points it out.

Here are some examples where I missed the boat (idiom) because I did not understand the hidden curriculum around talking about the subject of fat:

Example 1: My friend Sherry lost a huge amount of weight – like over 100 pounds. I hadn’t seen her for several months. We made a plan to go to an outdoor art fair. At one point I happened to be walking behind Sherry and blurted out, “Holy man Sherry Moyer – your butt fell off! From my vantage point, it looked exactly like that. Because Sherry is a good friend she laughed and said, “I’m taking that as a compliment!” She went on to tell me my words would not be perceived as a compliment by someone else. I think people are a bit too picky. After all, if I looked my butt fell off I would be pleased to have the whole world take notice and say so!

Example 2: My friend Brenda, on her way to a meeting, directly asked me, “Does this suit make me look fat?” The day before she had asked me nearly the same question and I had given an answer that was accepted as supportive and kind. Problem was – I couldn’t remember what I had said. I decided to hook into my comment of the previous day and in the most reassuring voice possible I replied, “You don’t look anymore fat today than you did yesterday.” Let me tell you – that did not produce the intended results!

Example 3: Many women like to wear clothing that makes them appear thinner than they actually are. One time a friend and I were presenting together for a few days. She had gotten two new sweater sets. The first day she said out loud, “I hope these new sweater sets don’t make me look fatter than I am. Do I look OK?” to which I replied, “Yes, you look fine.” The next day she put on the second new sweater set and was looking in the mirror this way and that way. “How do I look?” she asked. Wanting to be a good friend and knowing she was worried about looking fatter than she really was I responded, “No worries. You do not look any fatter than you really are.” Let me tell you – even though I intended to give a compliment, my words were not perceived as one!

Example 4: I think it is a safe thing to say that nobody wants to be fat. I do not know one single person who wishes they were a fat person. It is good to be a healthy weight so as to avoid all sorts of health problems, but mostly women want to look good. We try all sorts of diets and different sorts of food plans. We walk, run, bike, and do whatever we can to jiggle off as much fat as possible. Even after I have worked very hard to lose weight, I often times am still the heaviest person in the room. I was so very pleased recently when in the company of a handful of others that I blurted out my truth to all exclaiming, “I am so glad that I am not the fattest person in the room!” Funny thing – it got really quiet. Even though every woman in the room who was not the fattest person was secretly very happy about that fact, unlike me, they did not voice it.

I have learned some of the hidden curriculum about fat. Nobody likes to be fat. No compliment should contain the word fat in it. Newly skinny people often do not like to be reminded they were once fat. And no matter where you are in the ranking of women in the room nobody else wants you to announce the comparison unless they are all skinnier than you!

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 May 25, 2015

Autism and Meaningful Employment

May 28, 2015Autism and Aging, Communication, Growing Up Autistic, Hidden Curriculum, Social Considerationsautism, autistic, autistic experience, employment, first person account, sensory, transitionadmin

Autism is a developmental delay. This is particularly important when it comes to our youth who are at the age typical youth graduate from high school and launch into their adult life. Typically developing youth are ready to go off to college or become employed in a full time job upon high school graduation. For a few, this happens immediately upon high school graduation, but for most it takes another process where they work a job, attend higher education, and move away from the family home – either all at once or a little at a time so that over the next few years the high school graduates find their starting place in the big wide world.

For our youth with autism, because of the developmental delay, that launching takes different trajectories. For some, attending high school as a special education student in the age 18-21 category allows for further skill development and potential job placement. This is great if the job placement is looked at as a first job.

We have all had our first jobs where we learned all about the world of work – about things such as being on time, arriving at work ready to engage in the job, managing our personal and social lives outside of work hours, how to fit in and have conversation with the various groups of people (co-workers versus the boss) along with all the other numerous learning experiences our first job afforded us.

What I see happen all too often with our 18-21 year old special education students who remain in high school and who are supported in their first job is that first job is thought of as the end of the story. What should be a first job experience often comes with an assumption that it is a life long job placement. This is wrong on ever so many levels. Just think back to your first job and consider how rewarding and fulfilling it would be if someone else decided that would be your job for life.

Another problem our students with autism face is they are most often put into job programs along with other students with developmental delays without consideration of their cognitive ability. This matters. For developmental delays other than autism, cognitive ability (as measured by intelligence scores) is typically lower than average. Individuals with autism may have less than normal intelligence scores, but they are just as likely to have normal and even above normal intelligence. And yet, because of autism, they also have a significant developmental delay. Shredding paper, wiping down tables in fast food places, or other similar jobs might be a good first job, but will not likely be a satisfying life long job for someone of normal or above normal intelligence. Because our job programs for students with developmental delays are geared towards those who also have significantly decreased cognitive abilities, the programs are often poor matches for students with autism.

The developmental delay in autism also looks different across adulthood than it does for those with intellectual disability. People with autism get their diagnosis due to differences in social, sensory and communication areas. These delays in childhood often show improvement in individuals across the lifespan. This is different than intellectual disability where IQ is fixed and does not improve over the lifespan. Autism is a developmental delay. It is not stagnation! Youth and young adults with autism continue to make gains develop over the lifespan.

To improve across the lifespan, the areas affected by autism – social, sensory and communication – are the areas that need to be addressed in transition programming for our youth with autism. All the employment and independent living skills need to be taught with this in mind. I co-authored the book The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment to address some of the areas our youth with autism need in order to be successful.

Something happening right now in my corner of the world to assist youth with autism to transition from high school and to eventually take their place in the world is a project called Meaningful Employment at Common Threads near Madison, WI. This project was chosen as a finalist for the State Farm Neighborhood Grant. The winners of this $25,000 grant will be chosen by popular vote on Facebook. The top 40 of the 200 finalists will each receive the $25,000 to use for their project. We desperately want to be in the top 40. We plan to purchase the startup equipment for a licensed commercial kitchen. This is a natural next step for our transition programming to afford those in our cooking class to be supported in the next step – getting their first job!

Please vote for our project. We are currently at 54 on the leader board. Help us make it into the top 40 by voting each day through June 3, 2015 – remember to check the box to give us all ten votes each day you vote.

To vote: First get onto your Facebook account and then use this link

NOTE: The voting is now over.

Please pass around to any person or group on Facebook who might be interested in helping us make a difference when it comes to employment for youth with autism. Know that I thank you from the bottom of my heart!

Sincerely,

Judy Endow

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.

Common Threads Family Resources Center, located minutes from Madison, WI, offers school and mental health programs geared toward individuals affected by autism, behavioral disorders, and mental health challenges. Our experienced and talented team of professionals creates a daily environment of acceptance and growth where students and clients flourish. http://www.commonthreadsmadison.org

State Farm Neighborhood Assist is a crowd-sourced philanthropic initiative that lets communities determine where grant funding is awarded, exclusively through Facebook. The initiative utilizes the State Farm Youth Advisory Board to vet submissions for causes and allows Facebook users who download the free State Farm Neighborhood Assist application to vote for the final 40 grant winners. The program has been inspired by the incredible number of neighborhoods that are coming together to solve a problem or improve their community.