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Why Autistic People are Left Out in the Cold in Communications: The Cultural Iceberg

I will admit to having a bit of a fan-girl crush on Edward T. Hall (may he rest in peace.) His work in cultural communications fascinates me, and his Cultural Iceberg has given me incredible insight into why we autistic folks have such a tough time communicating and otherwise interacting with our typical peers. 

Edward Twitchell Hall was a cultural anthropologist who specialized in non-verbal communication during WWII. His work spans beyond the Cultural Iceberg, and he explores how time and space affect culture as well - all insightful topics to explore if one is so inclined. The Iceberg is particularly salient to autistic communication and culture, though, because in it, Hall talks about how culture consists of surface things that we typically think of making up a culture: food, language, fashion, literature, dances and other performances, festivals, holidays, and more.

However, there is a Deep Culture, that, according to Hall, can only be learned by living in that culture, and absorbing the culture through non-verbal observation. Things such as: communication styles and rules, notions of courtesy and manners, friendship, concepts of fairness and justice, self, attitudes towards various people in our lives, approaches to religion, decision-making, problem-solving, courtship, and much, much more. For a full list, and more information on the Cultural Iceberg, see Hall's book Beyond Culture or check out this blog, How to Develop Your Cultural Intelligence. Here's a picture from that blog:

When I first saw the Cultural Iceberg, I was very excited, because the things listed in the Deep Culture area are the exact things that autistic people "get in trouble" for all the time - we experience misunderstandings and miscommunication around these things regularly. Indeed, some are even used by diagnosticians to determine autism - "failure to make eye contact" - "deficits in pragmatic language" (a fancy way of saying that we use conversational language in different social situations differently than our dominant culture.) 

Indeed, when one looks more closely, many of the current diagnostic criteria for an autism diagnosis are culturally constructed, and, if put through the sieve of Hall's iceberg, may start to look quite a bit like a different culture, rather than a disability.

Note: I am not saying autism isn't disabling, it is. In addition, I believe that there are many parts to autism that are not part of the diagnostic criteria that should be, and are actually physically disabling features. As an example, Sensory Processing was just recently added as a diagnostic criteria, after years of autistic people telling researchers it was part of autism. We need a lot more of that type of thing, however, that is a discussion for another time. 

Back to the iceberg! 

So, why do autistic people vary from our dominant culture so much in so many of these areas? The secret lies in Edward T. Hall's specialty - non-verbal communication. As a group, and on a spectrum, we as autistic people have varying levels of difficulty decoding non-verbal cues. We grow in our ability to do this as we age, as all people gain abilities as they age, however, our younger years are typically spent not picking up on all the non-verbal cultural cues that our typical peers are easily adapting to. 

This is the reason why people think that the solution is to give us social skills classes. It seems logical on the surface - if someone doesn't naturally pick up on culturally embedded cues, teach them didactically! Some autistic people are even hungry for this information - they want to know the secrets. There's a big, big problem with teaching social skills, though. People who work with autistic people already know this problem - we have difficulty "transferring skills across settings." They think it's because we are so rigid, or can't adapt when one thing is different, but here's the real truth:

Cultural expectations are different in every classroom, every boardroom, on every team, in every group of friends, in every family, in every city, in every state, every country. 

And, we do not have the inherent ability to "read" those expectations the way a person without a non-verbal learning disability does. And teaching us "social skills" in one setting does little to nothing to help us in a different setting, i.e., next door. Or, please help us, if we move to a different city or state. 

So, we make mistakes. Pretty frequently. And, depending on the person and the culture, those mistakes can be held against us for a long time, or have serious consequences. 

It doesn't need to be a grim picture, though. There are two things that will brighten the communications picture for autistic people, and bring us in from out in the cold:

1) Teach us to advocate for ourselves. "I don't always know the implied meaning of things, so if there's something I'm not getting, please say it directly to me." and "Sometimes I can be very direct, and I never mean to offend. If I say something that you find abrupt, please ask me a question about it."

2) Teach others about our culture. Communication will always be a two-way street, and other people can learn to add more direct information around their implied meaning if someone isn't picking up on it. I believe this should be part of every communications class, every teamwork class, every lesson around cultural inclusiveness.

So, for example, if you don't want to hang out with someone after work, and your usual method of saying, "I'm busy" is met with continued requests to get together, be more direct. Be direct and kind. "I really appreciate that you want to spend time with me after work, and I think you're a nice person. I enjoy talking with you sometimes at work, but I won't ever be able to spend time with you after work. Please don't ask me any more." To some people, this may feel too direct, however, it may be the nicest thing you can say to someone who needs to have all the information. 

Your take-away from Hall's Cultural Iceberg is this: if someone (anyone, you don't need to know their diagnosis) is communicating or acting in a way that is different from your cultural expectation in any of the Deep Culture areas of the iceberg, take a step back and ask yourself if they might be coming from a different cultural perspective than yours. Instead of becoming upset or offended, ask them a question, or do something to make yourself feel safe. I have a friend who says, "manage your stories," or manage what you are telling yourself about that person just because they are acting in an unexpected manner.

Edward T. Hall - thank you. 

If I could change the world

An online friend who is in the process of writing a revolutionary book about the history of autism posed that question to me. "What would you do if you could do something that would change the autism world?"

Here's what I wrote to him:

My dream for autistic people is that the professional and educational views would shift so that young children and school-aged students would be viewed and interacted with as competent, capable humans who process the world in an autistic manner, rather than the current viewpoint that autistic people are broken humans who must be fixed through massive amounts of therapy and skills training. I believe that the current medical model method of attempting to teach autistic students to "fit in" or learn social skills, including spoken speech in some cases, sends an unwanted message to our autistic youth: a message that they are broken, not acceptable, that people do not like them as they are (this is actually a phrase they are told, repeatedly, "people won't like you if..."). It shouldn't be surprising that we often hear young autistic students say, "I want to get my brain fixed. My brain is broken." This is not a belief they are born with, it is a belief they are taught. 

 

Instead, what if we taught our young autistic students, from birth, that they can achieve what they set out to do, with the abilities and ways of thinking they were born with? What if professionals and educators learned to understand autistic people, and speak their language, instead of insisting that autistic students work endlessly to change their way of interacting with the world? What is autistic students were allowed to use their energy instead to build their natural talents, to pursue their interests, to go after their dreams? What if they were allowed to simply play, like other children, instead of spend 40-plus hours per week in therapy?

 

The good news? We already have the tools that we need to start doing this now. All we need is a shift in thinking. Remember, the goal is to understand the autistic student, and allow them to shine. Here's a list of helpful tools:

 

1) Hire qualified autistic people to design, manage or consult with educational and professional programs. This is imperative. When looking at qualifications, go beyond education to consider life experience. Remember that not all may have completed college, as it is not yet accessible to most autistic students.

 

2) Use communication tools that allow one to understand perspectives. Collaborative Problem Solving (from Think:Kids, Massachusetts General Hospital, Department of Psychiatry) is a tool that can be used with cognitive ages 3 and up, including non-speaking autistic people. It is invaluable in gaining the perspective of the autistic person, and also serves as a tool to build skills in flexibility, problem solving and frustration tolerance across settings, in a relational, conversational context, without requiring hours of therapy or skills building work. 

 

3) Allow and encourage the use of assistive technology for communication, and learn to recognize and respect all forms of communication, not only the spoken word. 

 

4) Support identity development by incorporating concepts such as Martin E.P. Seligman's "Learned Optimism" and Albert Bandura's "Self-Efficacy" into educational and parenting models.

 

5) Incorporate Universal Design for Learning concepts into the classroom, and Universal Design concepts (signage, etc.) into infrastructures. This, of course, supports all students, not only autistic students.

 

6) Provide parent training that teaches the above concepts, and supports parents in incorporating teaching activities of daily living into their regular routines. Bolster parent access to in-home supports, and remember to include qualified autistic people as consultants, providers, and managers. 

 

That's just one dream, of course, and there are many.  I'll come back and post a link to his book once it's published - I can't wait to read it!

 

UPDATE: Here's Steve Silberman's book: Neurotribes: The Legacy of Autism and the Future of Neurodiversity

 

Thank you, Five Guys Burgers and Fries

It's been a rather grueling week, culminating in a big autism awareness event at the college where I work, and now on to moving at the end of the month. So, my son and I decided to head over to Five Guys Burgers and Fries on North East 24th Street in Redmond, WA to relax a bit before hitting the packing again.

While we were there, a young man, maybe in his 20s or 30s came in, with a remote controlled toy helicopter. He was very excited about this helicopter, exclaiming to anyone that would listen, "It WORKS!" He wriggled and danced and stimmed to the 80s music, and I wondered how the staff would interact with him. 

What happened next literally made my day. Each staff member greeted him by name, asked him about his helicopter, and took time out to have a conversation with him. He got himself a little plate of peanuts and a small portion of ketchup, along with some napkins, and sat down at the table next to us. We smiled happily at him.

The fry cook offered him some fries, and when he said, " a little?" asking for more, the cook said, "that's okay, it's enough" and the young man repeated, "it's enough" and took the fries happily to his seat. He continued on, eating fries and peanuts, getting up and dancing, stimming and showing his helicopter all around.

At one point he turned it on, and made it spin around, while very carefully holding it so it wouldn't take off. He and my son had a lovely exchange about the helicopter and when he exclaimed again that "it WORKS," my son and I agreed that indeed it did, and this young man was so excited with our acknowledgement that his excitement has stayed with us for the rest of the day.

I just want to say "Thank You" to Five Guys Burgers and Fries in Redmond, WA for making this social connection possible, for this young man, for me, and for my son. I will never know if this young man has a particular diagnosis of anything, but both my son and I are on the autism spectrum, and social connections while out in public are not common. So, thank you, Five Guys, for being the kind of place that welcomes and embraces everyone, and makes us all feel at home.

You made today better for two people on the autism spectrum, and I'm guessing that you don't know that you were helping people with an invisible disability while you were connecting with this young man who is so clearly your friend.