Not Otherwise Specified

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.

Review: Why "Love on the Spectrum" Falls Short as a Dating Model for Autistic People

We have a guest author today: Jamie Boyd, who is a parent, student, and Program Assistant for the Neurodiversity Navigators program at Bellevue College in Washington State. Jamie writes...

A REVIEW OF LOVE ON THE SPECTRUM:
REASONS WHY IT FALLS SHORT AS A DATING MODEL FOR AUTISTIC PEOPLE

I will start by saying that while neurodivergent, I do not identify as autistic myself, so please take everything I say with a grain of salt, as I most definitely do not consider myself any kind of expert in being a voice for the autistic community.  That being said, the most problematic theme of this docu-series, was one of repeatedly pushing neurotypical dating social skills agendas.  Whether via an autism relationship consultant, dating “boot camp”, or innocent family advice, the idea that autistic people should conform to neurotypical standards of dating etiquette in order to date properly and successfully, is painfully ableist at its core.  To elaborate, it was suggested by Dr. Laugeson from UCLA, that “we all” follow a common set of dating rules and norms, and that it is helpful and beneficial to make these more explicit to autistic people.  Really, though?  Neurodiverse people prefer to interact in exactly the same way on a date as neurotypical people do?  More on blowing holes in that hypothesis later.

I further found it an interesting contradiction that many of the parents, who openly embraced the uniqueness of their children, and even expressed hope of their children finding happiness by meeting like-minded people with similar interests, condoned these supports.  If you recognize that sharing similarities makes the best match, why, then, would you encourage and invite into your home, a person who would teach your child it is imperative to act in a way that is inauthentic of their true nature?  Many of those same parents referred to “how far their children had come”, though, so maybe I shouldn’t be so surprised.

There were several glaring examples of times when this went horribly wrong, when the natural and appropriate inclinations and interpretations of autistic individuals were steamrolled by neurotypical ideas.  First, you had Maddi, who knew what she wanted, and wasn’t afraid to say so.  She aimed to be upfront and honest in her conversations with potential boyfriends, answering matter-of-factly in a mock dating conversation with her parents the question about whether or not she wanted kids, with a simple “no”.  Instead of leaving Maddi the space to find someone who would appreciate this about her, she was instead advised that doesn’t leave the conversation open to easily build on, fair enough.  So she then modified her answer to be, “No, because they’re a waste of time and money.”  This is where it goes South.  Dad then begins to inform her that what you really do to leave it more open, is be less concrete in your answer, leaving it open in a way that flirts with dishonesty.  Maddi immediately, and rightfully takes issue with this idea, dismissing it outright, stating she refuses to mislead a person that way.  Go, Maddi!  The idea that one must be borderline socially dishonest in order to interact successfully, is one of the most blatantly neurotypical ideas, that is quite often NOT shared by autistic people.  It is offensive and unreasonable to suggest that one must adopt this idea in order to carry on a successful conversation with another human, unless the agenda is simply to force autistic people to behave in a way that makes neurotypical people more comfortable.

Then you have Andrew, post speed dating event, when his match messages him on the day of their scheduled date, to inform him that something personal has come up, which is preventing her from seeing him that day, and also any time soon.  In his postmortem analysis with relationship coach, Jodi Rodgers, he shares that he interpreted his date’s communication as literal, and therefore, that her statement left the possibility of future dating open.  Jodi then goes on to inform him that his date’s message was likely not completely literal for the sake of politeness, and that what she probably meant was that she was really no longer interested in dating Andrew at all.  First of all, the fact that an urgent personal issue could come up that would temporarily prohibit an autistic person (or any person, for that matter) from dating, is completely feasible!!!  Second of all, the suggestion that an autistic person would sugar coat their message in the way Jodi suggested (see Exhibit A with Maddi in the previous paragraph), was just poor advice, or more accurately, again very wrongfully neurotypical advice.  In fact, a common theme throughout the show (when left to their own devices) was people having zero qualms about openly and bluntly communicating when there wasn’t a spark, or a love connection.  This was about the point when I started yelling at Jodi through the tv screen.  

Jodi’s unfortunate advice really blows up, though, when working with Kelvin.  After drilling into him the core purpose on first dates is to find common interests, and that you do that by asking questions about your date, in comes Jessica, who unsurprisingly wanted no part in this whatsoever.  She was instead content to play, and was uncompromising about, playing video games together while waiting for their food, as Kevin struggles to carry out his well-rehearsed plan.  It left me wishing to see how that same date could have gone without social skills interference, were they just free to connect nonverbally through an interest, in way that likely felt so much more organic and comfortable.  It left me to ponder how much of the awkwardness portrayed on these dates could have been avoided, were they not riddled with neurotypical constraints and expectations.

I do want to give credit where credit is due, though.  The successful relationships that are followed on the show, do exist without social skills interference (and are wonderfully successful without it).  While it was suggested to me they might be inspiration porn, a fair concern, I wholeheartedly disagree.  They were most definitely inspirational, but not because they were portrayals of disabled people doing everyday things.  In fact, I think they were shining examples of how relationships can be better.  They were open, honest, nonjudgmental and kind, and so very understanding and supportive.  And much to the discredit of Jodi Rodgers, they did not thrive because of common interests, but rather because of the embracing support of uniqueness as individuals.  You are having a bad day you can’t move past because you really need some navy socks right now?  Well, then let’s go get you some navy socks.  Right now.  Without judgement, assignment of value, or anything but selfless accommodation.  As hard as I am on Jodi, she did get one thing right.  We are all beautifully unique.  Embracing neurodiversity benefits everyone, and this show, and it’s definition of successfully dating, certainly has a great deal to learn about that.   

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. 

For Faculty (and others) to consider in the month of April

April may be many things - Spring! - however, for many autistic people it is a month of near-constant microaggressions, assaults on our humanity, and resulting depression. Because, around the world, April is "Autism Awareness Month". Many marginalized communities have a month or day dedicated to celebrating their achievements, but April isn't like that. Instead, April is spent celebrating symbols and research, interventions and supports - celebrating the "brave and courageous souls who fight autism every day to make the world a better place." The same people who purport to love us and want to "help" us spend their time celebrating themselves and what a great job they are doing "fixing" us. And even, sometimes, celebrating research advances to rid the world of our kind. 

Imagine for a moment if there was a month dedicated to celebrating what a great job people were doing making you different from what you are - making sure that you "fit in" to society's norms - all in the name of helping you. 

In your classes this April, there will be students who need your support and understanding. They need you to know that they are feeling the pain of these messages. The messages are everywhere - on social media, on television, in the news, on the sides of buses, and even coming from their loved ones. Your student may be very much in touch with their pain or they may have an underlying feeling of disconnectedness and not really know why. You have the opportunity to be a safe person. One who, instead of celebrating autism awareness, celebrates autism acceptance, understanding, and acknowledgement of our humanity. 

You don't need to know who is autistic and who isn't to show this acceptance. Your every day actions and words in the classroom and out, will speak loudly to your students. Allowing for flexibility is the most important thing you can do. Understanding that your student may be emotionally exhausted from daily assaults which may not leave much energy for assignments or class attendance, and may not have the words to explain. 

Beyond that, here is a short list for the month of April:

If you do mention Autism - mention Acceptance, not Awareness. In your talk or other :

Do	Don't
Feature current autistic activists, educators, and bloggers	Don't Diagnose historical figures or people who haven't said they are autistic
Highlight neurodiversity as a positive goal	Don't Talk about interventions and supports that make autistic people "fit in"
Use identity first language "autistic person"	Don't Use person first language "person with autism"
Use the neurodiversity infinity symbol or no symbol	Don't Use puzzle pieces
Use multi-colored or red lights or colors	Don't Use blue lights or blue color
Focus on autistic people	Don't Focus on parents or siblings of autistic people

This post is not meant to be an exhaustive list of the things that are done to hurt autistic people in April, or at other times. There's plenty written about those things, and people who want to learn about it can easily find information. Here's a link to some prominent autistic voices to get you started: www.bellevuecollege.edu/autismspectrumnavigators/community-resources/ .

If you want to learn more about how to positively interact with and support autism acceptance every day of the year, here's a link to a fantastic free e-book that will start you on your journey: www.stairwaytostem.org/autism-101-an-introduction-to-academic-success/ (Disclosure: although I have written one of the articles in the e-book, I have no monetary gain when people download the free e-book.)

Thank you for thinking about how you can help your autistic students survive the onslaught of April. 

Outward Thinking Clerk at Comfort Inn & Suites in Hamburg NY

Lately it seems that ADA accommodations are hard to come by. Advocating for one’s needs takes a bit of fortitude, since it is never clear whether the outcome will be getting needs met, or feeling frustrated, misunderstood, unfairly treated, or worse.

So, it was with a bit of trepidation, and after two sleepless nights that I approached the front desk clerk at the Comfort Inn & Suites in Hamburg, NY to make an accommodations request. “I have a bit of an odd request,” I stated, and was met with a smile. “What can I do to help?” replied the clerk. “There’s a spotlight that shines into my room at night,” I explained, “and I have photophobia – it comes right in through my eyelids, and I can’t sleep, even with the blackout blinds.”

“Let’s go take a look,” they said. “Maybe we can fix it, or move your room.”

“It won’t look too bright to you,” I warned, “I’m very sensitive.”

“I will do my best to be understanding,” smiled the clerk.

So, we went into my room, turned off all the lights, and the clerk, while I’m sure couldn’t understand how the light could keep me from sleeping, did acknowledge that the blackout blinds weren’t keeping it all out. After some discussion, we went outside, and the clerk tilted the spotlight away from my window!

Such a simple fix, and it took such a short amount of time, with almost no explanation (or pleading) on my part. I slept through the night, and, although I looked for the clerk the next day to say thank you, couldn’t find them.

I did, however, see evidence of that clerk the following day. Upon my return in the evening, I checked to see if the spotlight in front of my room was still tilted away from my window. Yes, it was. Imagine my surprise, delight, yes, even joy, when I saw that every single spotlight was tilted away from every window. This lovely thoughtful clerk had taken not only my needs into account, but had taken it a step further and imagined that perhaps others might feel the same, and benefit from the same accommodation.

This is what we mean when we say that accommodating for disability helps everyone. This is what we mean when we say that a universally designed environment is better for all. I am quite certain that there are many, many people, past and future, who benefit from this outward-thinking clerk, who currently works at the Comfort Inn & Suites in Hamburg, NY; from this lovely person who will touch and change the world throughout their life.

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.

 

Outrageous

Imagine you have Diabetes. You were diagnosed a few years ago, after struggling with baffling symptoms for quite some time. After your diagnosis, and treatment, you began to feel much better, and you are so grateful that you were finally able to find out what had been causing you difficulty for such a long time. Now, you work hard to learn more about Diabetes, and to follow your doctor's advice. You stick to your dietary recommendations, you exercise regularly, and, if needed, take the appropriate medications.

You have a doctor's appointment coming up, so you gather your blood sugar data from the past few months, and look forward to going over your case with your doctor. When you meet with her, she tells you, "I have some news for you. You no longer have Diabetes." You are pretty excited, because you think that perhaps your hard work has paid off and you have beaten your blood sugar problems. The doctor goes on to explain, "The medical definition of Diabetes has been redefined. Most people with blood sugar problems still fit that definition, but people like you, who are careful to eat properly, exercise and take their medications, no longer fit into that medical definition. So, according to the new definition, you are no longer Diabetic."

"What does this mean to me, Doctor?" you ask. "Can I stop taking my medication?" "Do I still need to be careful with my diet and exercise, or I am cured of my Diabetes?"

"Well, you still will need medication, and if you aren't careful with your diet and exercise, you will most likely get very, very sick, and could seriously damage your internal organs, so you definitely need to keep up on all those things." But, for medical purposes, you can consider yourself cured of Diabetes, since you no longer meet the medical definition of Diabetes under the new criteria.

"But, I can still see you, and my insurance will still pay for my treatment?"

"No, I am a Diabetes specialist, so you can't see me. You will need to see your General Practioner for treatment, since you don't have a particular disease, just some things that you need to watch. As long as you are careful, you are not that different from typical, non-sick people. And, no, your insurance won't pay for your medication anymore, because it's diabetes medication, and you're not Diabetic. I doubt that it will pay for nutritional counseling either, because you are doing so well."

"But doctor, I only found out about my Diabetes because my son was identified as pre-diabetic. You know, kind of a mild form of diabetes? Will people still be identified as pre-diabetic, and receive help for that? So that, like, future kids and families will get the help they need?"

"No, no, your son had a really mild case. Now, under the new definition, there is really no 'pre-diabetes.' Kids like your son will just have to watch what they eat, and be sure to exercise, and if they get worse, then maybe they will qualify for a diagnosis of Diabetes someday. Then they can get paid-for medical help. I'm not really sure how they will know to watch what they eat, etc. but I'm sure everyone will figure it out. It's always worked out before, right?"

Outrageous? I think we can all agree that simply changing the definition of a medical disorder does not actually take away the difficulties experienced by the person with that disorder. And, hopefully you've figured out that I'm not really talking about Diabetes, I'm talking about Autism.

Whether or not one agrees that the proposed criteria for Autism Spectrum Disorders in the upcoming DSM-5 is a substantial change from the current DSM-IV criteria is immaterial to this discussion. If you're interested in opinions about the content of the DSM-5 criteria, here are a couple of informative writings: Amy Caraballo (The Diagnostic Panic Room) and John Elder Robison (Panic Over Dsm-5 Changes in Autism Diagnosis).

What I want to point out is that it is outrageous that anyone is actually considering that it might be okay to boot people off the autism spectrum. Because that is what I've heard "professionals" spouting in some forums and news programs. That if we can narrow the definition of autism, we can save the money and resources for "the people who really need it." Which, in their way of thinking, would leave the people who have a working program in place out in the cold with no supports. And worse, without any understanding of what makes them different and what might help make things work for them.

That's the attitude I'm outraged about. That anyone would think it might be okay to simply change the definition of disorder to exclude people. That anyone might think that simply because some people have greater needs (in their opinion) it might be okay to deny services to others who (in their opinion) have lesser needs.

I'm not saying the new definition will exclude people. I'm just saying that the unabashed glee of some people who think it will is outrageous.

 

A Special Guy Joins the Army

He had just turned 18 when he marched down and answered his draft call to the Army, in February 1945. He had 4 months left until high school graduation. His father marched right down after him and unenlisted him so he could complete high school. Those being more reasonable times, he was able to accomplish this with no trouble. 

Immediately after high school graduation, he re-enlisted and went off to boot camp. Boot camp proved to be a very difficult time, as this devout young man was taunted and bullied for his religious beliefs and practices. There was most likely more to it, as he was to find out many, many years later. 

He earned the rank of Corporal and was assigned the position of Clerk Typist in the Army Ground Force Liaison Office. He had dreamed of becoming a pilot, but color-blindness grounded him. As a conscientious objector, he was never assigned to combat duty, and because the war ended soon after he enlisted, he never went overseas.

His Commanding Officer said something to him, that he remembers to this day, and that he never understood until 60 years later. The officer said, "I'd like to promote you, but I just don't understand you." 

These words haunted him throughout his life, as it seemed that so many people just didn't understand him. He didn't know why, and spent much of his life confused about this, and blaming himself for not measuring up.  

He married - a beautiful young lady that he met while on duty at Fort Dix, NJ - and they had four children and five grandchildren. When he was 80 years old, one of his grandsons was diagnosed with an autism spectrum condition - Asperger Syndrome. 

As he listened to the symptoms of the condition being read aloud, he remarked, "What are you reading? You are talking about ME!" After much investigation and consulting with professionals, it was determined that he did, indeed, live with an autism spectrum condition.  

At 80 years of age, this special guy finally had some answers that helped him make sense of years and years of difficulty. This new lense changed so much for him. It helped his wife understand some of the emotional difficulties she had faced in their relationship, and so, for the final two years of her life, she could truly feel the full force of his love for her, in ways she hadn't been able to completely appreciate before. And it helped him understand that it wasn't a flaw in himself that caused all those problems for all those years - it was a difference - one that was just hard for others to understand, but that didn't make him bad or wrong or broken.  

So, this Veteran's Day, I'm thankful for my Dad, and I'm thankful for the diagnosis of Autism Spectrum Conditions that is helping people around the world make sense of their differences. I'm also so grateful for the work of autistic advocates who work tirelessly to make the world a better place for those of us on the autism spectrum.

 

Sara Gardner, diagnosed Autism Spectrum Condition at age 41

 

Helping the Behaviorally Challenging Child

If you’ve tried reward and punishment systems (sticker charts, tokens, bribes, “consequences”) with your child and they don’t seem to work, read on! All too often, parents are told that they just need to be more consistent and their child will fall into line with the reward and punishment system. But, try as you might, it’s not working – and it’s not going too well at school either!

So, what’s up with that? Why do some kids thrive on a “token economy” (another word for rewards and punishments) and some kids actually seem to get worse? Is it really the parents’ fault for not being consistent or firm enough? Is the child just manipulating everyone to get what they want? Or worse, is the child simply “oppositional”?

Dr. Ross Greene, in his book “The Explosive Child” offers another way to look at “misbehavior.” He suggests that “Kids Do Well If They Can”^TM and if they are not doing well, then something is getting in the way. He talks about “lagging skills” and “unsolved problems” and the difficulty some kids have accessing coping skills in certain environments and situations. To learn more about his theory, and his plan for solving problems, called Collaborative Proactive Solutions (CPS) pick up a copy of his book or visit his website: www.livesinthebalance.org.

Let’s think about this theory of lagging or lacking skills. Imagine you are driving in a remote area, and suddenly have a flat tire. You realize you don’t have your phone with you, and even worse, you don’t have a jack in the trunk. You literally have no way to fix your car, or even get help. Then, imagine that a police car drives up. Your first feeling is one of relief – here is someone who can help! Let’s imagine, though, that instead of offering help, the police officer says, “It’s time to fix that flat. If you don’t get it fixed in the next 30 minutes, we’ll tow your car and it will cost you $5000 to get it back.”

Now, how do you feel? You’re going to get a “consequence” if you don’t fix the flat. But, can you fix the flat? No, you’re still in the same position you were moments before. You don’t have the tools that you need to do the job. And perhaps even more frustrating, the person you thought would help you is threatening you instead, and leaving you on your own to figure out what to do.

“Sure,” you may think, “threats of punishment can be very de-motivating.” So, let’s imagine further that another police car drives up, and this officer says, “No, no, let’s not punish for a flat tire. This person needs some positive motivation. Tell you what: you get that flat tire fixed in the next 30 minutes and we’ll give you a $5000 dollars. And, here's a mat to kneel on while you fix it.”

Are you able now to fix your flat? No. You still don’t have the tools. And, you are likely becoming highly frustrated, perhaps agitated, and even less able to think of a solution to your problem. The only “help” offered by the authority figures is threats or promises, and an unhelpful solution. But none of that actually gives you what you need to fix the flat.

This is the position our kids find themselves in frequently. Unable to accomplish a task, and feeling hounded by authority figures that, instead of helping, impose rewards and punishments. Is it really any wonder that they begin to give up, fight back, become oppositional and have meltdowns? Not really, if you realize that they simply do not have the skills to do what is expected of them.

So, does this mean we just stop expecting? No, we keep our high expectations for our children and we help them acquire the skills they need to accomplish what they need to do.

There are many roads to skills teaching, and CPS is an excellent choice. While working together with an adult to find solutions to problems, kids gain skills in frustration tolerance, cognitive flexibility and problem-solving. These are life-long skills that will also help them learn to comply with directions and figure out what to do when they are having difficulties. And, perhaps most importantly, it will help them keep their cool when problems arise.

Do yourself and your family a favor by exploring Collaborative Proactive Solutions (also called Collaborative Problem Solving) and learning what a tremendous difference in can make in your lives.

For further reading:

"Changeable: How Collaborative Problem Solving Changes Lives at Home, at School, and at Work" by J. Stuart Ablon, PhD

“The Explosive Child” by Ross Greene, PhD

“Lost at School” by Ross Greene, PhD

www.ThinkKids.org

www.LivesInTheBalance.org