Suggestions to help Autistic People Get Through this Pandemic

WOZ Chaos

by W.E. Powers

We watch the world grind to a halt. The blood pumps full force making our heart feel as if it is about to explode. Thoughts burn rubber racing around our overheated brain. It is the end of the world!

The turmoil currently facing millions during this time of a health pandemic is one autistic people like myself live with daily. So, honestly, my first paragraph describes what I go through when someone tells me I have to postpone my lunch by thirty minutes. Welcome to MY world, World!

Nevertheless, there are a few tools I have picked up along the way. I hope that parents with ASD kiddos might be able to use this time as an opportunity to teach these skills. Long after the pandemic has abated, the autistic person will still experience the emotional turmoil all of those around us are tasting. These skills are portable and can serve as tools for the rest of life.

EMPATHY

Moments of crisis are known to bring about the best in society. Empathy can transform the lives of those around us as well as the life of the person giving it. And just like any other skill, it is one that can be taught and practiced.

1. “Everybody” vs “Nobody”

My former employer told something that ticks-off many ASD people, “Everybody hates change!” UGG!!! Ok. Sure they do. I understood the statement, but I felt that nobody understood how the change impacted MY world. While the boss was trying to make me feel like a “normal” member of society, I felt excluded and hurt. I hated myself for not being able to respond to the changes the way “everybody else” was responding.

Right now, people all over the world are adjusting their schedules, changing their habits, and learning how to live in a world that looks nothing like the one they grew up in. And, honestly, it stinks for everyone. But every person faces those changes in their way. Some people will excel because they can stay at home and focus on a project. Other people will struggle because they are unable to socialize with co-workers.

NTs have the advantage of understanding and empathizing with others more broadly. They naturally “get” that these hardships are just that… hard. ASD people have a difficult time with empathy. One reason (my own) is that I have always felt like an external member of society. I could not relate to “them” because I was never a part of the crowd. How does someone with ASD learn the art of empathy?

Here is one idea on how to do this.

Make a list of characteristics “most” people have in common. This can start as a silly game for younger people: One head. They breathe air. Have them put their name in a column next to the fact that check off the things they also share. Yes, I have one head. Yes, I breathe air.

Next, make a list of characteristics that might be the same for some people but different for other people. For example: Only one foot? Has trouble speaking? Have them check off their column again. I have two feet, so I do not have a check there. I do have trouble with words, so I get a check for that one.

Finally, make a list of things they think are unique to only them. Example: “I have a cat named Tom.” “I like to wear green on Tuesdays.” Then ask them to make a second column with the heading “Anyone Else?” and go through the list thinking carefully about each statement. Could there be anyone else in the world who has a cat named Tom? They get a check! Does anyone else in the world like to wear only green on Tuesdays? You don’t think so? Ok, we will not give them a check for that one.

Watching TV together offers another chance to play this empathy game. That person is upset because they can’t buy milk. Do you like milk? Would you be upset if you could not drink your favorite lemonade for lunch? On a scale of 1-10, how upset would that make you? On that same scale, how upset do you think that person is on TV who can’t buy milk?

2. Helping Others Helps Us

The second part of empathy involves action. Helping others empowers the helper. It can bring a sense of order into chaos. Here are a few tips:

a. Include ASD person on something organized by others. Example: Is there a nursing home in the area that can receive electronic greeting cards from the outside?

b. Phone a friend. Make an effort to reach out to someone else who is feeling alone. “Who do you think is missing you the most right now? Do you think we should give them a call?”

c. Create art, write a story, or make up a new dance. Creativity is a gift humans give to one another. By sharing our feelings, we can help others feel less alone.

ANSWERS

Who? What? Why?! These are questions asked by everyone during a time of turmoil. Humans want/need to understand what is “actually” happening. It is how we survive. And even though we may not be able to obtain the answers, every clue is a stone we can stand on when the ground moves below our feet.

Neurotypicals can process many non-verbalized answers through understanding body language and facial expressions. Autistic individuals may need the answer presented more directly.

Consider this workplace scenario:

Mike (ASD): “Why can’t we go to lunch at 11:00 like we do every single day?”
James (NT): “Because the boss said we have to wait until 12:00.”
Mike: “But she always tells us to go at 11:00. I have the email from her about lunches. She sent it out three years ago! Did she forget? Why did she change it today?”
James: “I don’t have a clue.”
Lynn (NT) is listening in on the conversation notices James shrugging his shoulders and looking around Mike in an effort to plot an escape.
Lynn: “James, Mike doesn’t know why we were told to wait. I do not know why either. But I know that the boss has a reason. We may not be able to find out what that reason is though. Will you starve to death if you wait to eat lunch for one more hour?”
Mike (Laughs): “No. I don’t like change. But since the boss is in charge, it is ok for today.”

In this scene, Lynn interprets James’ non-verbal shrug for Mike. Mike was unable to “hear” that portion of the answer.

During this time with the Coronavirus outbreak, many people are asking complex questions. The ASD person is probably asking the same questions. But when the news reporter gives one answer and then has a different answer the next day, that can become overwhelming for someone with ASD. Can anything be done to assist someone on the autism spectrum in this situation?

1. Praise/encourage the curiosity behind asking the questions.

“That is a great question. I think I heard one of the reporters ask a doctor at the CDC that same question!”

By doing this, the ASD person will feel included in the conversation. They will understand that it is OK to have questions. The fact that other people have these questions will help them feel “normal” in many ways. I say it that way because there are many times when I feel like I am “dumb” because I need to ask for clarification. In my mind, it feels like everyone around me must have the answer already because they are not asking the question. Finding out that someone who is NT has the same question makes me feel normalized.

2. Teach how to find answers.

“Write down that question. We can go look online and see if we can find a reliable source that can answer it for us.”

Many valuable lessons can come out of this. Talk about the difference between first-hand reports and third-party information. How do you tell the difference between fact and theory? What does it mean when a reporter says, “The CDC speculates…” Is the source (CDC) a reliable source? Yes. What does the word “speculate” really mean? What is the definition of a rumor?

3. Report time!

As anyone who knows an ASD individual can tell you, we love sharing our information with everyone who will listen… even if we need to tie our audience to a chair. This is a perfect time to break out the flow-charts, graph paper, or markers. Help the ASD person find a way to clearly and concisely present a report to an audience. It can be an audience of one, or a group of teddy bears. It can be something in writing that is shared with the local news station. It can even be a movement-based dance expression. The goal is for the question and answer to become a part of the ASD person’s understanding. Even if the question can not have a clear answer, that unknown IS an answer. Math students will love the tie into algebra at this point.

ROUTINE

Humans, along with other living beings, benefit from having a routine. If a person has questions about the benefits of routine, this is a great article on the subject:

https://www.psychologytoday.com/us/blog/the-gen-y-psy/201810/the-power-routines-in-your-mental-health

So what is a person to do in times like these? Well, the news has been giving tips out on how to establish new routines. But these are geared towards the neurotypical. How can someone on the autism spectrum be convinced that it is OK to eat Friday night dinner out at home instead? Ready for more tips?

1. ASD folks love understanding WHY. Changes to a routine must be understood in the situational context. This is not a new routine that has to be followed for the remainder of life. Something is different because X, Y, and Z are now different.

2. Study/show how society had to make changes for other larger events in the past.

Example: Food Rations of WWII

Look at the actual food ration books online. Talk about what changes they would have had to make if they were living at that time period.

https://www.nationalww2museum.org/students-teachers/student-resources/research-starters/take-closer-look-ration-books

3. Talk about other examples of “normal” changes that are already familiar:

Yearly routines around “Spring Cleaning.”

What changes happen during a power outage?

4. Establish new routines

a. Focus on the independence and power of choice. We may not go out to eat this Friday, but you can choose one of these five meals for the family to eat at home instead!

b. Deconstruct the old and use parts to build the new. What did you like about going out to eat on Friday night? Was it the special music that played in the background? Could we play that same music at home this Friday night while we eat?

These are all just a few ideas that I hope will make it a little easier during this time of random strangeness. Autistic or not, change is a part of being alive. Together, we will learn from each other and grow stronger as a whole.

Wen of Zen

Born in Florida, I spent my childhood being bullied for reasons I did not understand. Autism spectrum disorders were unknown to my family or teachers. Taking everything literally, unable to read facial expressions, and emotional ruptures, resulted in being an outcast.

Today, art therapy provides me with a way to share my experiences and emotions with the outside world.

Header Art: WenofZen “Chaos”

3 Comments

  • I found your article first-rate: well-organized, accurate, cheering and empowering! Bravo, especially for capturing my experience in your lunch metaphor. (Or were you being literal? 🙂 )

  • Thank you for verbalizing an issue I have been trying to explain to my therapist. I have been unable to explain how important finding an answer is to me. I need to know! But after reading what you wrote it is more that I need to find out what is known. It is ok if there is no specific answer. The act of learning what is known makes changes easier to understand.

  • One other comment. We do not lack empathy. Some of us simply have a hard time understanding other people’s point of view. There are 3 kinds of empathy: Cognitive, Emotional and Compassionate. Cognitive empathy is most easily described by this saying “Walk a mile in someone else’s shoes and you will understand them.” Emotional empathy is feeling what the other person is feeling. Also called Personal Distress. It is when you have an emotional reaction to someone else’s pain. An example would be hearing about someone whose mother had just died and crying because you can feel their pain. Compassionate empathy is more than just knowing or feeling. It is the type that compels us to action. Considering the many social and climate justice warriors in our community I think we do not lack in this. It is Cognitive empathy that we generally have a difficult time with. This is easily remedied by explaining to the Autistic person why this event has effected the other person so badly. Once we understand it the Emotional and sometimes Compassionate empathy kick in.
    The exercise that you include in your blog is excellent for helping us learn Cognitive empathy and I applaud you for that. It will be very helpful for those of us who are struggling to understand that we are a part of a whole and not simply aliens dropped into this confusing crazy world.

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