Autistically Thriving

Every time autistic people interface with the world outside their skin they bring along their sensory system that is often unstable and foists many unexpected experiences upon them. The solutions we employ to deal with the many sensory assaults we experience in social envi- ronments are coded by others as “behaviors.” This is because other people cannot see the inside workings of our sensory system. They can only see the outward behaviors we display as we respond to our inner experience. The following is about one experience of eating at a restaurant, but it is easy to understand that most social participation for an autistic means managing a sensory system that is often unreliable.

Here is an example from my own autistic life:

Lots of people like to eat out. I do, too. Because of my sensory sensitivities, I have learned to reduce certain input to the best of my ability in restaurants so as to better enjoy the experience.

It is impossible to control for all sensory sensitivities at a restaurant. However, I have learned to scan the place and figure out what I can do to make it the best experience possible. A recent gathering was wonderful because the restaurant was spacious with plenty of room between tables, very few diners, soft lighting, soft music and chairs with arms. The perfect sort of place for me!

When the atmosphere isn’t so perfect, I ask for a booth if the place has booths. A booth ensures that nobody will walk behind me and surprise me, causing a startle reaction. A tall-backed booth greatly cuts down the noise. If a booth is not available, I ask to be seated along the perimeter of the dining room.

If there are blinking lights, TVs or lots of movement, I know I will get dizzy. Chairs with arms are great to help me stay anchored. Even if I don’t get dizzy, I often have trouble feeling where my body is located in crowded noisy places. If I don’t have a chair with arms, I will find something to lean at least one side of me against – wedge in with the table or, if in a booth, lean against a wall or a willing friend.

There usually isn’t much a person can modify about lights in a restaurant, but I try to avoid downlights if at all possible. Sitting on the perimeter of the dining room helps reduce the noise input. There is not the surround sound with a wall behind you!

Friends will often suggest I use my earplugs in a restaurant. I realize they have never tried wearing earplugs while eating! It magnifies the noise of your chewing so much that it is nearly impossible to eat. I control for whatever I can in a given environment and then do my best to cope with the rest. Sometimes I do better than other times.

One time I was on a trip with friends. Each morning we ate breakfast in the hotel dining room before setting out for the day. One particular morning, I couldn’t make up my mind about what to order. The waitress came back several times to see if I was ready to order. My thoughts were “sticky,” meaning I would get part way through a thought of what to order and then lose the thought, only to have it butt in on the next thought that involved the next menu item. It was frustrating. I know it made me look like I needed lots more help than I actually did.

When the waitress returned once again and I still did not have my order ready, I wanted her to understand that I wasn’t trying to be difficult and blurted out as way of explana- tion, “I am really not as stupid as I look!”

The waitress acted all flustered. I felt bad because I had no negative intent towards her – just wanted to offer an explanation of sorts about my situation. In retrospect, I should have left well enough alone, but wanting to smooth over the situation when the waitress was apologizing and saying she didn’t mean to rush me, I very supportively replied, “Oh, don’t worry about it. I know that you are probably not as smart as you look either.”

I tell this story so you can know our good intentions are not always conveyed by the words that come out of our mouths. This is especially true when we are on sensory overload or having trouble with movement in our thoughts or in our bodies. Please remember – we are doing the best that we can, given the neurology of our autism.

Selection adapted from  Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology

Note: The author is autistic, intentionally uses identity-first language (rather than person-first language), and invites the reader, if interested, to do further research on the preference of most autistic adults to refer to themselves using identity-first language.

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.

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. Some- times if I can start speaking about a research article related to my thoughts, the ideas in my head can hook onto this with corresponding words coming 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, 2009b) 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 impact 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.

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!

NOTE: This selection comes from the book  Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology. 