Category Archives: Autism and Aging

Autistic Adults Do Not Look Like Autistic Children

I recently presented to a room full of people on the topic of Autistic People and Literacy. A few days later I again presented to another group of people on another autism related topic. It doesn’t matter the autism topic or whether the group I am presenting to be educators, therapists, or parents of children with autism – I am almost always approached by someone wanting to know how it is that I do not look or act anything like the autistic children they know.

There are many reasons autistic adults do not look like autistic children. Here are some to consider:

1. The first reason is that all children grow up. Adults, whether autistic or not, generally do not behave in their everyday lives the same way they behaved as small children. We all grow and change with maturity. Autism does not prevent a person from growing and changing over time.

2. Autism means, in part, developmental delay. When we are children this delay can be huge, making us look very different from our same-age peers. However, delay does not mean stagnant. It simply means delay. Developmentally appropriate things that cannot be done at the correct age can often be accomplished later in life. Typically, this takes a lot of support and effort, but over time that support, effort and direct instruction tends to pay off, as we grow older, being able to do many things than we couldn’t as a youngster.

3. Autism means there are communication challenges. Even so, everyone communicates, including nonspeaking autistics. Challenges are the biggest when they are the newest. Over time communication challenges can be addressed, accommodated and supported. This takes time and much effort. The result is that the communication challenges seen in a 3 year old or a 12 year old will likely not look the same when that child is 30, 50 or 70 years old.

4. I personally have not met any autistics (and I have met a lot of people from my tribe) that have not been challenged by their sensory differences. Again, the challenges are the greatest when we are youngsters because we have not yet learned how to manage our sensory system in a world that is geared for people with “typical” sensory systems. By the time we are 40 or 60 years old we are more in-the-know and can plan for meeting our own sensory needs much better than we could as youngsters.

5. Autistics want friends just like everyone else. As youngsters, most of us do not have the skills to make that happen. Also, children are grouped together according to age and due to our developmental delay we are often not social peers with same-age children. This compounds the difficulty in making friends. Early adulthood can be especially challenging as we are often socially and emotionally at a much younger age than people expect when they look at us. It is often taboo for young adults to have friends who are children, even when the young adult is the same emotional age as a 10 or 12 year old. It takes a lot of years for this to get better, but it can and does get better for a lot of autistics. Just think about it – it would be considered “inappropriate” for a 22 year old to befriend a 14 year old because of the eight-year difference, but when you are in your 30’s or 50’s nobody cares if there is an eight-year or more difference in age between friends.

These are just a few of the reasons why autistic adults do not look like autistic youngsters. In my case, there are a few more points to consider. Not only am I autistic myself, but autism is my profession. I work in the field, have written several articles and books and have made more than 300 presentations in the States and internationally. To do my work I must be diligent in my sensory regulation every day, I have mentors who I can turn to around communication struggles and other challenges, and I generally know what I need and how to ask for it should the occasion arise.

Even so, I am just as autistic as ever. I no longer live in an institution or use body slamming to communicate my needs. Over the years I have learned to work with my autism, honoring who I am in this world. Some days I am better at this than other days. I am nearing retirement now and when people approach me and are befuddled that I do not look anything like their autistic youngster these are the things I would like them to consider. Yes, autism can be difficult. I know. I live it everyday. It is my life. It is my profession. Yes, I agree – autistic adults do not look like autistic children. It is because autistics have unlimited potential.

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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 February 23, 2015

The Pseudo Logic of “Not Autistic Enough”

Recently, I was told by a parent of a child on the autism spectrum that I am “not significantly enough affected by autism to be able to understand real autism” and therefore should stop speaking out about autism.

Some aspects of my personal history (Endow, 2009) that you may find interesting include:

  • Was nonverbal for some time
  • Had self-injurious behaviors
  • Lived in an institution for some years of my childhood
  • Lived in two different groups homes
  • Diagnosed with classic autism

I understand that as a parent of a child with significant needs you may look at me and look at your child and see no similarity. Please know that in the future of your child’s life autism will not look the same as it does today. Your child will grow and change over time just as all human beings do.

Some aspects of my life today (Endow, 2009) that you may find interesting include:

  • Married, had three children, divorced and raised them alone, one child with ASD diagnosis
  • Decided to get and obtained a master’s degree in social work in order to better support my children
  • Worked several years in a homeless shelter, developed and case managed a program designed to stabilize homeless shelter clients in their own apartments
  • Worked in the field of mental health for several years, limiting my practice to autism for the last two decades
  • Have authored several books, numerous blogs, been interviewed for TV shows, documentaries, have a DVD (with another in the works), maintain a website (www.judyendow.com) and speak internationally on autism related topics
  • Must spend time intentionally regulating sensory system in order to function in my daily life
  • Run my own business which enables me to combine work and flex calendar as needed for my autism neurology in order to allow me to do my work and earn enough income to support myself
  • Maintain a variety of work including consulting, writing, painting (see and purchase art prints and greeting cards at my website) and speaking by scheduling my work so as to avoid movement disturbances in my body (had a few episodes of catatonia in the past)
  • Do not speak on the phone for business. Only speak on the phone with a handful of people and after much practice that usually involves Skyping as a stepping-stone to phone only (without the ability to see the conversation partner)
  • Use a high degree of visual support (which I make myself) and routines (helps in reserving energy for novel situations) in my daily life
  • Am happy, have friends, am relatively healthy (a bit overweight), have a satisfying career and am just as autistic as I have always been

The practical response to the comment that I am “not significantly enough affected by autism to be able to understand real autism” and therefore should stop speaking out about autism is it is too late – much too late! I already have written several books that have sold around the world, have written numerous blogs and articles, have a DVD and am developing more content for my website that will include a video blogging feature. Also, I will not stop speaking on autism topics in my own country or in other countries. I will not be canceling already booked engagements and I will continue to book future speaking engagements. Even if I did stop, as I was encouraged, I cannot undo what is already out there in permanent form as books and such.

The logical response to the comment that I am “not significantly enough affected by autism to be able to understand real autism” and therefore should stop speaking out about autism is that these words do not make sense. Autism is a spectrum. There is no experience of autism that is more real than another experience of autism. All autism is real.

Furthermore, the idea that if a person can speak about their autism they are not autistic enough to weigh in on the subject is faulty logic. This sort of reasoning would mean that any autistic able to share about his/her autism really is not autistic in the first place – that autism means no ability to communicate. Not only is this untrue – it is a silencing attempt someone is trying to pass off by dressing it in a cloak of pseudo logic.

My friend Toshi Kinoshita summed this up nicely when he said, “That’s like saying Karl doesn’t like bacon enough to really love it and therefore should stop eating it. People can say the stupidest things.” (Personal Communication, 2015).

Just like Karl will not stop eating bacon, I will not be silenced. My experience of autism is not the same as anyone else’s experience of autism. It is my experience of autism. It is a valid experience of autism. When I speak and write about it many people tell me my words are helpful. Thus, I choose to continue writing, speaking, consulting and painting about autism – being who I am and doing what I do in this world.

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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 January 4, 2015

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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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 2, 2014