Category Archives: Autism and Aging

An Odyssey: Learning the Hidden Curriculum

Learning the hidden curriculum social rules of society remains a struggle for autistics long after they grow up. For example, even though I am an almost 60-year-old woman with autism, over the past few years, I have learned a lot of new-to-me hidden curriculum items. The hidden curriculum refers to all the social information that everybody seems to know but isn’t directly taught to anybody. Here’s an example:

Don’t scratch your privates really means don’t let anybody see you scratch your privates.

Guessing at Hidden Curriculum Rules
Once I amassed a volume of hidden curriculum items I began being able to “guess” at some of these new-to-me hidden curriculum items when in novel situations. For example, in the swimming pool locker room, I saw a woman put her towel on the bench before sitting down. A week later, I saw two other women do the same. As a result, I guessed there was a hidden curriculum item about not sitting naked on the locker room bench – likely for sanitary reason, I assumed.

Guessing Wrong!
Then I discovered sometimes I guessed wrong!

I was visiting my friend Brenda for the first time at her new house. Upon arrival, Brenda showed me around. The hallway bathroom was for my private use she said, opening the door of the hallway closet that stored the extra soap, shampoo, body wash, toothpaste, etc., added, “Go ahead and use whatever you wish.”  Since I have always brought my own toiletries I wondered why Brenda was doing this.

That night when I bathed, I saw a heavy-duty loofa brush hanging in the shower which was also fully stocked with a variety of soap, shampoo and body wash. Hmmmm … Brenda had indicated that this was my shower. It wasn’t like anyone else was going to be using it while I was there. Also, even though she had never before opened the cabinet of toiletries telling me to use them, she had done so this time.

I thought about this and came to the conclusion that maybe in her new home Brenda wanted to make sure her houseguests were really clean. It all made sense. Having just moved in, everything was new and clean, so why not expect your houseguests to stay extra clean too, I reasoned.

I do not like the way loofa brushes feel, and this heavy-duty brush had quite stiff bristles. But I wanted to be a good houseguest, so I decided that no matter how much it hurt, I would use it. The first day I only used the brush on my arms. But even though it was very stiff and scratchy, each day thereafter I used it a little more, thinking I would get accustomed to it and, above all, wanting to be a good house guest.

Discovering New Rules
During this visit, I was working on the 2011 Hidden Curriculum Calendar for Older Adolescents and Adults. Consequently, Brenda was pointing out hidden curriculum items as she thought of them so as to be helpful to my project. Imagine my surprise when Brenda one day asked, “Do you have the one about not using the loofas and bath brushes in someone else’s shower?”

Totally perplexed I burst out, “What about it?”

Well, we both wound up laughing hysterically about this! What a relief not to have to use that stiff body brush and to know that Brenda wasn’t going bonkers about me being clean enough! I learned it is important not to assume any hidden curriculum. I replaced my erroneous hidden curriculum item about complying with the personal cleanliness standards your hostess puts upon you even if it seems excessive with this one:

A guest in not meant to use the bath brushes, loofas or sponges in a host’s shower as these are considered personal items. It is permissible to use bottled shampoo, conditioner and body soap. If in doubt, ask your host.

Strategies for Learning New Rules
So, even though today I am a grown woman who travels about speaking and consulting, having autism means that I have a neurology that doesn’t permit me to automatically pick up all the hidden curriculum rules that other people “just know.”

Here are a few strategies I discovered for learning the hidden curriculum:

1.  Learn key phrases others use when they are about to deliver hidden curriculum information such as

    • I shouldn’t have to tell you, but…
    • It should be obvious that…
    • Everyone knows…
    • Common sense tells us…
    • No one ever…(Endow, 2012)

2.  Watch for nonverbal reactions of disapproval from others such as a look of disgust or bewilderment. You might use one of the Hidden Curriculum On the Go app on your iPhone, iPod, iPad or other device to get a hidden curriculum item a day to become more informed about hidden curriculum. Then, when people give you strange looks you can use your knowledge of hidden curriculum items to become a detective. I have pieced together the strange looks with social convention violations on my part after amassing hidden curriculum items. These apps (one for which I wrote the content) are:

Hidden Curriculum for Kids
Hidden Curriculum for Adolescents and Adults

3.  Pause and Match – intentionally pausing before responding to people to determine if my literal take on the conversation matched the topic of conversation. (Endow, 2012)

Example: When a person says he doesn’t know why the cop gave him a speeding ticket he is not looking for the literal explanation of a speeding ticket is issued when a driver exceeds the posted speed limit, but instead the intent is to communicate his displeasure at having received the ticket and hoping to garner your sympathies.

4.  Laugh Along – Sometimes people laugh when I make a hidden curriculum mistake because it is funny.

“If somebody starts laughing, I immediately laugh along. Most times I don’t understand why I am laughing. Luckily, it usually doesn’t matter because most people like to laugh with you. Funny thing is that the other person usually makes enough of a comment that I come to understand why we are both laughing. If not, I can usually figure it out later, or if I trust the person enough I can let him or her in on the secret that I don’t have a clue why we are laughing. Then, once the situation has been explained, we both have a really good laugh together!” (Endow, 2012, pg. 51-52)

5.  Practice Discovering Hidden Curriculum
“Consider engaging in a repeating experience of your own, such as going to a gym, mall, movie, bowling alley, and so on. Each time you repeat the chosen activity, intentionally watch to see what hidden curriculum items you might discover. Start your own list to keep track of the new items you discover.” (Endow, 2012, pg. 69)

Summary
Hidden curriculum does not come easy to autistic neurology. Even so we can learn to discover the hidden social rules in the world around us. Today I am much smarter about hidden curriculum and commit far fewer social blunders than I used to. Not only does this allow me to feel more comfortable social situations, but understanding all these hidden social rules is often a deal breaker in terms of being accepted and in getting along in so many areas life, impacting friendships, education and employment.

REFERENCE

Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic Adult. Shawnee Mission, KS: AAPC Publishing.

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 Originally written for and published by Ollibean on August 2, 2014

 

Fractured Vision: One Autistic Phenomenon

I started painting with acrylics in 2012. I wanted to use that medium to illustrate aspects of my autism. To date I have written several articles and books along with speaking in three countries about aspects of autism. Painting is one more way to explain some of the nuances of autism to those who might be interested.

Painting allows me to show perceptions of the world that I see with my eyes as delivered through the neurology of my autism. I match up what I see with the colors and movements of paint on canvas paper. I have not taken classes about painting, other than a one-hour lesson where someone allowed me to watch him paint and ask questions about painting supplies and techniques. I determined after that hour that I could learn to paint.

So, now I paint. I just do it and really do not know if I am doing it correctly or not. What is important to me is the finished product – a painting allowing others to be able to see what I see.

It took me most of my life to realize that what I see isn’t what most other people see. I want people to understand some of the aspects of my autism that I cannot expediently explain with words, but can readily show by painting.

One of those aspects of my autism is something I call fractured vision. It typically occurs when I am in sensory overload. What I am looking at divides up. Imagine a picture that is suddenly cut up into several pieces. One day when this fractured vision phenomena was occurring, I wondered if I might be able to illustrate it through painting.

To illustrate this concept, I copied what was happening by cutting a painting into the pieces my visual perception was delivering to me at that moment. Over the course of a few weeks I took each opportunity of real-time fractured vision as I experienced it and showed what happened by painting and then cutting the painting into the fractured pieces my eyes were delivering to me.

Please know that not all autistics experience the world in the same way I do. The more salient take away point here is that more than 90% of autistics have sensory system differences from the neuro majority population (Baker, 2008 and Baranek, 2006). Those differences impact all of who we are and how we navigate in this world. Because most people don’t experience what we experience there typically are not words adequate to describe it.

When I was growing up, and as a young adult, whenever I would try to describe my experience either it was discounted as not possible, I was said to have a big imagination or it was thought that I was hallucinating. If you want to read more about my story you can do so in the book called Paper Words: Discovering and Living With My Autism (Endow, 2009). From my early 20’s until my late 50’s I refrained from talking about my experiences. It kept me out of psychiatric institutions and that was a good thing.

Today I am braver and I am now in charge of my own life so am able to talk about aspects of my autism without needing to worry what will happen if others do not believe me. At this point in my life others do not have the power to decide my experiences mean I am in need of a psych hospital – at least they no longer tell me this AND even if people would think it, there is no longer anyone who has the power to make it happen. This helps me to be brave and speak out and show my experience through painting.

Here is a picture of one of my paintings I use to illustrate the aspect of my autism I refer to as fractured vision. To see more paintings illustrating fractured vision look in the 2013 Gallery of the Art Store at my website. If you would like to see a larger collection of my paintings along with words explaining the aspects of autism they illustrate please see the book called Painted Words: Aspects of Autism Translated (Endow, 2013).

originalBlue Mountain Panorama by Judy Endow

Note: Greeting cards along with prints in three sizes
 available for purchase
at the
 Art Store on www.judyendow.com

REFERENCES

Baker, A. E., Lane, A., Angley, M. T., and Young, R. L. (2008). The relationship between sensory processing patterns and behavioural responsiveness in autistic disorder: a pilot study. J. Aut. Dev. Disord. 38, 867–875.

Baranek, G. T., David, F. J., Poe, M. D., Stone, W. L., and Watson, L. R. (2006). Sensory experiences questionnaire: discriminating sensory features in young children with autism, developmental delays, and typical development. J. Child Psychol. Psychiatry 47, 591–601.

Endow, J. (2013). Painted Words: Aspects of Autism Translated. Cambridge, WI: Cambridge Book Review Press.

Endow, J. (2009). Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.

Originally written for and published by Ollibean on August 5, 2014

Speeding, Autism and No Ticket Issued!

In the past few years I have had two encounters with the police while driving my car. The first time I pulled into a school parking lot, answered an email on my Blackberry, gathered my stuff together and let out a little scream, as I didn’t expect to see a police officer standing at my car door!

“Good afternoon officer. How might I help you?” I inquired, knowing that it is very important to always be polite to a police officer.

“Do you know why I am stopping you?”

“No, I do not,” I replied honestly.

“Do you know the speed limit on this road in front of the school?”

“Yes I do,” again, my honest reply.

“And what might that speed limit be?” questioned the officer.

“It is 25 mph,” I responded confidently.

“I clocked you at 33 mph. Is there a good reason you were speeding?” the officer asked.

I was getting increasingly nervous, but knew I needed to tell the truth. I said, “No, I do not have a good reason for speeding.”

“Are you coming to pick up a sick child?” asked the officer.

“No, my children do not go to this school.” I did not know why the officer was asking me this question as it didn’t seem to have anything to do with speeding.

“Perhaps you are in a hurry returning from your lunch break,” the officer offered. It seemed this officer was trying to be friendly with me, which was a bit weird to my way of thinking.

Being as polite as possible in light of my increasing nervousness I responded, “No, I am not late. In fact, I am early. That is why I was answering an email and didn’t notice you standing at the door.”

Acting a bit annoyed with me the officer asked for my driver’s license. While I was fishing it out of my purse he asked one more time, “Do you have any good reason for speeding?”

I knew exactly how this officer felt because I too was becoming a bit annoyed. Again, I tried to give my explanation in the very politest voice I could muster. “Officer, I have no good reason for speeding.  I am not coming to pick up a sick child. I am not coming back from lunch. I am a consultant to this school district. I come here every month. I always arrive early. I am aware of the speed limit. I have no good reason at all for speeding, but do in fact have a bad reason for speeding. I simply wasn’t paying close enough attention. I know that is bad of me as a driver and I totally deserve a speeding ticket because I disobeyed the law. I am very sorry. I will pay closer attention from now on.”

The officer took my license and after a few minutes returned telling me I had a clean driving record and he saw no reason to issue a ticket. He admonished me to pay closer attention in the future especially when driving near schools.

I said, “Are you sure? I did break the law. I will gladly pay a fine.”

Ignoring me the officer told me to have a nice day and to drive carefully. I was very puzzled over his behavior, even though I was glad that I didn’t get a speeding ticket. That night I asked a friend who explained to me that the officer likely didn’t want to issue me a ticket if I could tell him a reasonable explanation for my speed. She said given my situation, even though many people would have the same explanation, they would never say so to the police officer. Seems that most people make up a story – they actually lie about speeding and the police officers are used to it.

I know my autism gifts me with literal thinking and a kind of honesty most others in the world do not have. I know this doesn’t always work out well for me, but I do not understand why people often consider this trait a deficit in regards to me as an autistic person. I sincerely believe it is a bad policy to lie, especially to a police officer. In this instance abiding by the saying, Honesty is the best policy, worked well for me. End result: No speeding ticket.

REFERENCE

Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic Adult. Shawnee Mission, KS: AAPC Publishing.

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Originally written for and published by Ollibean on October 9, 2014

Autism, Airports and Lifelong Learning

For most of my life airports have befuddled me. It didn’t so much matter earlier in my life because the only time I used an airport was to go to visit my parents in another state. Back then, before we had the heightened security of today, people were allowed to meet passengers as they stepped off the plane which allowed me to simply follow them through the airport without needing to concern myself with the confusion all around me.

In My 40’s

Then, airport security changed. People picking up passengers could no longer go through the security checkpoint. I had to figure out how to navigate on my own after deplaning. No problem yet! I was able to get myself all the way to the luggage retrieval carrousel in this one airport as I had traveled the walking path many times. Eventually, I could exit the door to curbside pick up at this one familiar airport.

In My 50’s

Then came a wrinkle in my navigation. I met a friend who lived in new-to-me city that had a much smaller airport. A smaller airport didn’t make it easier because size didn’t matter to me – familiarity was the comfort factor. This new airport was novel. “NO, NO, NO!” is how I react to anything novel. Even though at the time I had just passed 50, I felt I did not have the experience to navigate a strange airport on my own.

My friend assured me I could do this. “It will be ok,” she encouraged. “You only have to walk a few steps. Just follow the other passengers. It is impossible to get lost. I will be right there waiting for you.” Sounds really simple. Not so, I knew. A confounding factor is that I have poor face recognition, especially in crowds of people. Even though I knew my friend would be waiting I also knew that I wouldn’t recognize her. We made the plan that she would say, “Hello, Judy Endow. It’s Brenda Myles.” The plan worked.

Good thing because I soon began to be invited to speak in places that required me to fly. Each time was so nerve-wracking for me until one day my friend Brenda explained to me how airports are all laid out the same way. Even though the floor plans of each airport is different they all have check in, security, departure gates, luggage pick up places, etc.

Once the rhyme and reason of airport layout was pointed out to me it made sense. There was a familiar pattern that I could count on. I felt a bit stupid for not ever having realized this, but that is the way my autism plays out for me. This sort of ordinary information that most people just automatically pick up often needs to be directly pointed out to me. Once this hidden curriculum information is directly taught, I totally get it and never again need to be told. My neurology can then accumulate the critical mass necessary to enable me to navigate airports automatically without needing to think through each step each time while using an unfamiliar airport. Understanding hidden curriculum is sometimes necessary in critical mass development that allows for my autopilot mode when performing tasks. In this example the hidden curriculum that the general pattern of navigation through an airport rather than the floor plan of every particular airport was the salient information needed to be directly taught to me before I was able to accumulate enough experience to develop the critical mass that enables me to now navigate any airport without much effort at all.

In fact, today I fly all over the country and no longer get anxious about navigating an airport. Besides having learned the general components of airports and how they are set up I have also learned that I can ask for directions if I should get lost inside an airport. In addition, I have learned to look for signage inside an airport. Again, I didn’t know to do so until it was directly pointed out to me. It is another one of those hidden curriculum items most people just seem to know, but doesn’t come naturally to me. (Just so you don’t get the idea that I have an intellectual disability, I would like to insert here that I got a near perfect score on the ACT when I took it in my 30’s.) My difficulties have nothing to do with lack of intelligence, but everything to do with my autism neurology!

Besides becoming successful in airports around the country, I now go out of the country and have added the passport and customs protocol along with foreign languages to my repertoire of airport navigation. The first time I went on an international flight all by myself I was nervous about checking in using my passport. This was something new. I detest new things!

Airport Thievery

I arrived at my hometown airport plenty early, approached the self-check in kiosk and followed the directions. During the process a directive flashed on the screen instructing me to “please swipe passport.” My brain automatically defaults to a literal interpretation of everything I take in. I don’t decide to do this. It is just the way my brain works. In addition, I think in pictures. This means that pictures pop up in my head. The first picture my brain had recorded for “swipe” automatically popped up when I read “please swipe passport.” This picture involves a pickpocket theft – the thief “swiping” a wallet from his victim.

I was appalled by what the kiosk was directing me to do. How awful to have to steal a fellow passenger’s passport! I clutched onto my passport even tighter in case the guy at the next kiosk might try to swipe it. I intentionally took some slow deep breaths trying to calm myself while keeping an eye on the potential thieves all around me. It was hard to calm down. I looked at the directive “please swipe passport” still on the screen I loudly announced, “I’m sorry, but I can’t do this!”

An agent came over, looked at the screen, took my passport and swiped it – just like I swipe my credit card at the grocery store. Once I saw that I realized exactly what the kiosk directions meant because I have swiped my credit card many times. My brain just hadn’t pulled up the right “swipe” picture.

Conclusion

Since that time I have become much more comfortable in airports. It has made my life bigger. I recently returned from a trip to Paris, Lisbon and Madrid, able to fly and navigate solo even when new languages are added into the mix. I can now find myself a taxi and get to my hotel after my plane arrives at its destination without even speaking other languages. I simply write down the address of where I am going and give it to the driver. Along the way I have learned that I can successfully deal with the unplanned surprises that come up. Ultimately I can get where I am going without being any more frazzled that the average passenger. Chalk this up as something more a person can learn after 50. I have learned not to assume an autistic person will never learn to do something. We cannot predict what another person will be able to learn in the future. Soon I will be 60 and am wondering what new things I will learn in the next decade!

REFERENCES:

Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic AdultShawnee 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.

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Originally written for and published by Ollibean on July 10, 2014

Excerpt from The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment

CHAPTER FOUR
THE HIDDEN CURRICULUM BEYOND THE JOB MATCH

The job match is considered crucial for successful employ­ment of anybody, but especially so for adults with social-cognitive challenges, including those with autism spectrum disorders (ASD), who tend to thrive in jobs whose requirements match their personal strengths and preferences (Schutte, 2009).

Grandin and Duffy (2008) identified jobs that are compatible with the learning style of visual thinkers and nonvisual thinkers. They have also identified vocations that are less suitable (see Table 4.1).

Researchers Howlin, Alcock, and Burkin (2005) attempted to quantify the concept of job matching for adults with high-function­ing autism spectrum disorders (HFASD) by identifying the types of work held by 89 adults with HFASD. Table 4.2 highlights the type of work, examples of jobs within each type, and the percentage of adults who held this type of position.

Many of these jobs have structure, routine, and focus on a special interest, all crucial attributes when finding suitable employment for individuals with ASD (Hagner & Cooney, 2005). Researchers and practitioners further assert that adults with HFA are successful in jobs that require few or very structured social interactions. For example, jobs that incorporate mentors (see Chapter Two) who clearly specify job responsibilities, expectations, assumptions, and rules provide the predictability necessary for employees on the spectrum. Table 4.3 lists a series of factors that create employment success (Dew & Alan, 2007; Hagner & Cooney, 2005; Hurlbutt & Chalmers, 2004).

Table 4.3
Factors That Lead to Successful Employment for Adults on the Spectrum

Consistent schedule and job responsibilities

• Ongoing relationship with a mentor, who explains specific job duties,
respon­sibilities, expectations, and rules related to productivity,
breaks, tasks, social interactions, and how to ask for help

• Predictable social demands

System to keep track of work progress

• Predictable routines for lunch, breaks, and other unstructured times
during the workday

• Time before the beginning of the workday to organize self and tasks

• Direct communication with opportunities for clarification and
verification

• Reminders and reassurances

• Coworkers who initiate interactions and help “keep an eye out”
for the em­ployee

• If support providers are involved, a method to transfer these
services and supports to the mentor and fellow employees

Adults with classic autism and with HFASD rank the lowest among all disability groups in employment, with 6% and 12%, respectively, having jobs (http://www.autism.org.uk/living-with-au­tism/employment.aspx). This, combined with the short job tenure of high-functioning adults on the autism spectrum, makes it clear that the concept of job matching must be broadened to take into consideration the hidden curriculum beyond the job match. That is, the traditional notion of job matching is only one component since many adults can easily master the job task itself. Among those who get hired, many find that the work environment, along with all the complex everyday situations generated by the various players, tips the scales in such a way as to become the deal breaker in terms of keeping the job.

In this chapter, we will look at elements of the work-related hidden curriculum that are known to pose challenges for individu­als with autism and other social-cognitive difficulties who otherwise meet the specific “technical” requirements of a given job. These include (a) arriving at work ready to engage, (b) managing stress to maintain engagement throughout the workday, and (c) interpreting and reacting to social demands.

Excerpt from The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment, pp. 45-49.

Curric

REFERENCE

Myles, B.S., Endow, J. & Mayfield, M. (2013). The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment: A guide for individuals with Autism Spectrum Disorders and other social-cognitive challenges. Shawnee Mission, KS: AAPC Publishing.