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Meltdowns: Faculty and Staff Response Makes a Difference

If you’ve been in academia for any length of time, you’ve likely witnessed a student or two (or even a colleague) lose their cool in a classroom or elsewhere on campus. This is what usually comes to mind when one thinks about autistic meltdowns: someone who is very upset and letting everyone know – loudly. In fact, some staff and instructors are concerned when they learn that there will be autistic students on campus. They aren’t sure what autism entails, and have heard something about meltdowns, which leads to concerns about violent outbursts.

As the director of an autism advocacy and educational program at a large community college, I once received an email from an instructor who was concerned that a student in her class might start shouting and throwing chairs and books. She had recently found out that the student was autistic. She went on to state, “This student was in my class last quarter, and had no behavior problems, but now I am concerned.” As I assured her that her knowledge of the student’s disability would make no difference in the student’s behavior, I did wonder if that was entirely true. Her own heightened anxiety, or attempts to “control” the student, may very well be triggers for the student!

So, let’s talk about what faculty and staff can do to support autistic students, and really all students, both proactively – to prevent meltdowns – and reactively – if a meltdown does happen.

What is a meltdown?

The first thing to know about meltdowns is that they are a normal part of being autistic. As we get older, most of us, neurodivergent and neurotypical people alike, learn how to manage meltdowns, including navigating our environment and managing our cognitive and emotional loads to prevent them, or manage them in a safe environment, however, college brings new experiences, so, particularly at the beginning, there may be an adjustment period for some students.

When you’re not familiar with an autistic meltdown, you might confuse it with a “tantrum” or attempt to intimidate others. However, it’s important to realize that an autistic meltdown occurs when the person is overwhelmed: by their sensory environment, by cognitive demands, by emotional demands, or sometimes all these together. The person experiencing the meltdown is not doing it on purpose to gain something. Once it starts, and sometimes even as it’s ramping up, the meltdown is in control of the person, not the other way around.

A meltdown can be an explosion or an implosion. It can look like someone putting on the brakes: stopping, freezing, not responding – sometimes in place, sometimes in a corner or on the floor. Or, the student may be crying, sobbing, screaming, shouting, sitting, standing, lying on the floor, stomping their feet, curled up in a corner, rocking back-and-forth, hyperventilating, completely silent, unable to speak, or a combination of these.

On rare occasions a meltdown may include self-harm – banging one’s head, hitting one’s arms or face, stabbing oneself with a pencil, or scratching oneself. We’ll discuss what to do later about this later in this post.

Proactive measures: what can faculty and staff do?

When we examine why meltdowns happen, we can begin to see what we can do to help prevent them. Meltdowns are a very specific response to overwhelm and overload. Sensory, cognitive, and emotional. When we work to lessen the sensory, cognitive, and emotional load on autistic students, we will also reduce the likelihood of meltdowns, and, improve the academic experience of those and other students at the same time.

How can we support sensory processing?

Think through the environment. Are the lights bright? Can they be dimmed? Can you use natural light instead, or ask for different types of lighting? Can you put up “no scent zone” signs, and honor this yourself? What about sound? Sometimes instructors think it’s nice and relaxing to start off class with mood music. And, while that may be true for even most of the students, it can be torturous for the autistic student. Consider whether you are willing to torture one student so that other students can have some relaxing music for a few moments. This concept extends to group work – can some groups leave the classroom for group work, to minimize the cacophony? If you’re working at a noisy front desk, can you move to a less crowded location to have a conversation with the student?

The more you can lessen the sensory load, the less your autistic student needs to expend their energy fighting it, and the less likely an overwhelm will happen. There’s quite a bit written about Sensory Processing Disorder – here’s a great place to start: Ten Tips to Help Neurotypicals Understand Sensory Processing

Cognitive processing

Autism is considered a cognitive disability. This is different from an intellectual disability, although a person can have both a cognitive and an intellectual disability, of course. A cognitive disability involves the way we use language, memory, and attention to organize and use information. So, to support a person with a cognitive disability, it is important to use accessible language, and provide memory and attention supports. Using Plain Language, Universal Design, and putting things in writing will go quite a long way towards reducing the cognitive load on all students and allow them to expend their energy on learning the course material instead.

Put it in writing and organize it

Whether it’s a due date change, or directions to the cafeteria – write it down! When you meet with a student, get in the habit of emailing meeting notes after the meeting, so that you both have a written record.

For assignments, ensure that they are organized and easy-to-find. With most colleges using a learning management system (LMS), such as Canvas or Blackboard, it’s a natural place for students to look for assignments online. Use it to your advantage to keep everything in one place. For each assignment, provide links to the materials a student will need for the assignment, or create assignment “packets” online. Anything that you can do to remove executive functioning barriers will reduce the cognitive load for your autistic students, and better support other students as well.

Plain Language

One terrific way to provide accessible language is to use Plain Language. Plain Language was developed by the U.S. government in the 1990s, to better support the variety of people who used government websites and other written materials. It was made law by the Plain Writing Act of 2010. Plain Language is something that is written in a way that users can:

• Find what they need
• Understand what they find
• Use what they find to meet their needs

This is useful for any type of directions, whether it’s for an assignment, applying for a scholarship, making an appointment, registering for a class, or any of the myriad things that college students do on a daily basis. Using Plain Language supports many different students; not only autistic students. The information on the Plain Language site gives terrific detail on how to craft Plain Language for different purposes. It’s worth your while to learn about it and learn to use it! You can find more at the U.S. Federal Government site on Plain Language.

Universal Design for Learning (UDL)

Infuse UDL principles into your pedagogy to engage students and allow them to show their understanding of the material in multiple ways. Again, as with most things we do to support autistic students, using UDL will better support all students.

Universal Design isn’t just for the classroom though. Staff can implement elements of universal design in interactions with students by understanding that interactions can and should be flexible; allowing for different ways of interacting depending on the need of the student. You can learn more about UDL at Cast’s Universal Design for Learning site.  

Plain Language and Universal Design Combined

Some of the things we’ve already talked about can also reduce the emotional load: using Plain Language as discussed above can help you strip some unneeded emotional content from your communications and assignments, leaving students available to better absorb information and focus on the important concepts.

Universal Design can help as well! Allowing student choice in assignments also allows students to avoid topics that bring up trauma or stress. Be aware that many, if not most, of the autistic students in your class will have strong emotional responses to certain topics, and it’s not always easy to predict what those topics might be. Of course, other students may have strong emotional responses as well. We are not attempting to remove all stress, certainly, only to provide it in amounts that the student can reasonably handle without a meltdown. Allowing student choice, while also steering clear of ableism in assignments and instruction, will support students in regulating themselves in the academic environment.

Emotional Processing

College can be an emotional experience for all students. New experiences, new people, new concepts and even ideologies to learn, all go into the emotional roller coaster that is college. For an autistic student who may also have difficulty sorting through or naming these emotions, who may experience emotions more intensely than their peers, and may even be absorbing the emotions of those around them, the emotional experience of college can become incredibly overwhelming. Add to that the microaggressions experienced regularly by all disabled people and you can begin to get the picture.

Respect: what does it mean to an autistic person?

Using your classroom rules to provide a safe classroom environment will also go a long way towards reducing the emotional load on the autistic student. Remember that it’s not enough to tell students they must be respectful – be sure to define what respect looks like in terms of behavior, both verbal and non-verbal. Rolling eyes, snickering, avoiding group or lab work with a person, etc. are all examples of non-verbal disrespect that should be specifically stated as against classroom rules from the start. As the instructor, or other college official, you inform how other students will respond to the autistic student, so be sure to respond in a kind and respectful way yourself.

If you’ve learned about autistic communication, you already know that most autistic people appreciate direct communication. In fact, we have a nonverbal learning disability that prevents us from picking up on some implied meanings, so, if you have something to tell us during class, please tell us! But, and this is important, be as kind as possible. “Sam, that is really interesting! Class, did you hear what Sam was telling us about plankton? I would love to hear more, Sam – can you email me, or come to see me during my office hours? I need to move on to the next part of the lesson right now – class will be ending in 20 minutes, so I don’t have much time. But, I appreciate your depth of knowledge, and can’t wait to learn more later!”

After class, you can make a deal with Sam that they send you interesting information via email so that you don’t get distracted during class, and perhaps you can even use some of Sam’s information in the class at another time. It’s likely that Sam has good information to add, however awkwardly or inappropriately they may do it.

Avoiding Ableism

Just as we would never make a racist or sexist statement in class, or include these things in our assignments, we must be careful to avoid ableist statements in class and in assignments as well. This topic is too large to tackle here, and, for non-disabled people and non-autistic people, is an education that takes time. T.L. Lewis maintains a page about ableism, as a good place to start.   

Reactive measures: when a meltdown is in progress

The first thing to do is assess the situation:

• Is the student safe?
• Are others around the student safe?
• Is the educational environment being disrupted?

If the student and others are safe

As long as the student is safe, and not disrupting the learning environment of other students (more on this soon!) the best bet is to let them know you are there if they need you, and then give them space to work things out on their own.

Here’s what autistic people have to say about what they need in this moment, from a Facebook poll by Radical Neurodivergence Speaking:

Over 100 people said “leave me alone, act like I’m invisible.”

• If I'm with a safe person, as everyone else said, please pretend I'm invisible.

• If I'm alone, approach quietly and unobtrusively from the side (not head on and definitely not from behind) and ask me if I'd like help finding somewhere quieter. Wait for me to process your question. If I say yes (verbally or nonverbally), lead me to a bathroom or somewhere away from the flow of people. This does not require touching me. If I say no (verbally or nonverbally), please go back to pretending I'm invisible. Cassandra Adore

• Elizabeth Durham McPhersonLeave me alone. Don’t touch me, don’t ask me questions, don’t talk about me like I’m not there. If you want to be super helpful you could bring me a glass of water, but don’t try to hand it to me, just set it down nearby so I can have a drink when I’m ready, because I can guarantee when I’m functional again I’ll be thirsty.

• Carlota Manuela Bocio DuffI want to be able to go home and to be talked to about things gently until I can get home and lie down and try to rest. 

• If I get into a meltdown I want people to help me calm down and understand that what I’m saying isn’t from my heart but from stress or upset/meltdown.

If the student is not safe or is too disruptive

If the student is actively harming themselves to the point that you are concerned about real harm, such as a concussion, needing stitches, broken bones, or something else, it’s time to act. Similarly, if a disruptive meltdown is happening in a classroom setting, it’s important for the well-being of the rest of the class that the student be moved to a quieter location.

How you do this is important! Speaking quietly, approaching gently, and showing understanding will go a long way towards supporting the student and also showing the class that this is not something to fear, rather something to support. Avoid touching the student if possible.

You can say, “Let’s get you somewhere quiet. I’ll walk you over.” Then take the student to the Disability Center, while asking the class to remain until you return. If it’s not possible to leave the class, phone the Disability Center to ask for help.

As a last resort, you can call on Campus Safety for assistance, explaining that it is not a behavior violation, but rather a student in distress who needs a gentle escort to the Disability Center. This is an important distinction!

Often, the act of leaving the difficult environment will be enough to help the student begin to regulate on their own. They should still go to the Disability Center for further support unless they specifically state a preference for going home to unwind.

Final Thoughts

How you respond to students will always inform how students respond to each other and even to themselves. Maintaining calm in the face of storms, holding a non-judgmental attitude, building relationships from the start, and incorporating inclusive principles into your curriculum will go a long way towards avoiding meltdowns altogether, and being able to handle them if they do occur.

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