Fostering a Better Relationship with Our Meltdowns

What do your meltdowns look like? How often do you let yourself have one? All through my adolescence and young adulthood, I hated the idea of having a meltdown. I fought against them. I suppressed. I tried to extinguish them, but they came all the same. And they were ugly. They were angry, verbally aggressive, and self-abusive. Each one was an explosion I felt left me out of control; I didn’t know myself when they hit.

I imagine what I’m describing sounds familiar if you are autistic or you have an autistic child. Meltdowns can seem tragically transformative. I’ve heard things like, “I don’t know myself,” or, “It’s like they become a different child.” It can be frightening whether we’re the ones having the meltdown or we’re watching it happen to someone we love. But I’ve come to believe that meltdowns can be important to autistic individuals, and that we can approach them in a healthy way.

The Reset Buttons

I’ve sometimes compared meltdowns to a hard reset — those times you hold the power button down on a computer or a device to force it to shut down. Usually, the device is locked up or behaving erratically in some way, and the best solution seems to be a clean slate. Yes, there will be consequences — lost browser tabs, unsaved documents, etc. But the benefit outweighs the consequences.

Meltdowns are similar. Things get to be too much, and we crash. We systematically block everything else in some kind of isolationist or emotional behavior, and we restart. Once the meltdown is done, we’ve “reset our points,” as my wife puts it. (I’ll write about that in greater detail in a future post.) Now we can continue our day, and for many of us, it’s as if the meltdown never happened — unless we harm someone else or ourselves in the process. That’s where approaching our meltdowns differently comes in.

Embracing the Reboot

Every autistic person that I know can feel a meltdown coming. That’s when we try to push it down and away. That’s when we try to suppress, but what if we didn’t? What if we embraced the fact that we needed to reset, immediately found a safe place to do so, and just let it happen? I don’t have a large amount of data to support this, but I can personally attest to the fact that this approach has changed meltdowns for both me and my probably-autistic daughter.

For her, meltdowns used to look like throwing. When she went into her room to melt, anything was fair game for throwing. Our first intervention was to remove a lot of throwable stuff and provided her with some soft balls. If she needs to throw, it might as well be something safe. The next was to help her determine when a meltdown is coming, and be proactive about it. “Do you need to melt?” one of us may ask. If she acknowledges it before she reaches the breaking point, then the meltdown looks far different — some crying, some curling up in blankets, perhaps a nap. The throwing has largely gone away.

In my own life, things look similar. Instead of fighting the meltdown until it becomes an inevitable explosion, I find someplace safe and secluded; then I close my eyes and let my system reset. There might be tears; I will almost certainly doze off. But I won’t verbally assault anyone, and I certainly won’t inflict self-harm. By proactively embracing the meltdown, I’ve seen the severity and duration decrease. Then I can go on about my day.

Rejecting Toxic Normality

We sometimes point to statements like, “Real men don’t cry,” as symptoms of toxic masculinity in our culture. Suppressing emotions can lead to violent and abusive behaviors in the long run. Likewise, we have accepted a form of toxic normality where we have largely come to accept that healthy people don’t have meltdowns where in fact our meltdowns help many of us on the spectrum reach a psychological and sensory equilibrium that indeed helps us through overwhelming circumstances.

Meltdowns are normal for autistic people. It’s not the easiest aspect of autism to talk about. It’s certainly among the most stigmatized characteristic in the public perception of autism. But it’s a fact of life.

• Autistic folk: Learn what factors push you toward a meltdown and by how much. Not only can this help you regulate your sensory and emotional needs, but it will help you better identify when a meltdown may happen and allow you to prepare for it. Know what safe spaces will be available to you. Know if you should avoid a certain activity or setting to allow for that safety net. Let the meltdown come sooner rather than later, and see if that helps the severity and duration improve over time.
• Autism parents: Learn your child. They may not be able to self-regulate, so you have to be able to help them. When you see a meltdown coming, verbally affirm that it’s OK, that they are safe, and that you are there to support them. Provide a safe place for the meltdown to happen, and don’t dwell on the meltdown after it’s over. Again, with time, you may see severity and duration reduce.

Meltdowns are part of being autistic. They’re not as glamorous or inspirational as some other aspects of our lives, but they are a fact of existence. Therefore, instead of fighting them so hard that we make our own lives worse, let’s develop better relationships with our meltdowns so they can be the sensory and emotional resets we need them to be.

Quietly Silencing Autistic Voices

I want to share a conversation I once had with a business representative who was interested in me contributing to their autism awareness efforts:

Me: I’d be happy to help with your efforts. I and my daughter are both on the spectrum, and I’m happy to help out with Autism Acceptance Month. I’ll help how I can, except for promoting anything to do with Autism Speaks. I don’t personally support that organization.

Them: Thanks. April 2 is Light It Up Blue Day. Would you like to help us coordinate that?

Me: Thanks for reaching out. I’m sorry, but Light It Up Blue is an Autism Speaks-associated event. They have done a lot of damage to the public perception of autism and fail to accurately represent autistic voices to the public. I would be happy to do other things to engage autism and neurodiversity acceptance, like a Q&A about growing up with autism, talking with your HR or Facilities departments about creating sensory-friendly work environments, discussing how to better accommodate neurodiverse employees and candidates, etc.

Please note that I edited this conversation for brevity and anonymity.

I heard nothing after that. I actually didn’t expect to. Sometimes, people don’t understand when we in the autism community say that we feel silenced at times. It’s not that anyone is pointing at us and saying, “Be quiet!” (Well, except occasionally on Twitter.) Instead, the issue is that we end up marginalized when the way we want to contribute to the conversation doesn’t fit a predefined pattern — conventions of engagement that have been defined by non-autistic people.

We silence people when we simply don’t include them in the conversation — or when we drop out of the conversation when it becomes uncomfortable. Imagine a panel on women’s health that included no women, a community event on race issues that featured no minority voices, a symposium on accessibility that had no disabled participants. These seem ridiculous (even when a couple have indeed happened), but that’s the way we still handle autism. The conversation is about us rather than with us.

When it comes to autism “awareness,” we have culturally become comfortable with a shallow definition of the word. We have events showing that we acknowledge autism is indeed a thing. We can quote statistics and figures. But awareness isn’t enough anymore. Unfortunately, awareness has brought with it stigma and misinformation. We have to move past awareness to acceptance and cooperation, and the only way that will happen is by bringing autistic voices into the conversation.

 

Comic: Understanding the Spectrum

Understanding the Spectrum

There’s a fantastic explanation of the autism spectrum on Tumblr. Follow the link to take a look. The artist also provides a high resolution PDF to download.

Here’s a sample:

FDA Warns Companies to Stop Peddling False Autism Cures

FDA Warns Companies to Stop Peddling False Autism Cures

One of the FDA’s most notorious targets is a cure-all called Miracle Mineral Solution, whose creator claims to have found “the answer to AIDS, hepatitis A, B, and C, malaria, herpes, TB, most cancer, and many more of mankind’s worse diseases.” The operative ingredient in MMS is sodium chlorite, which is later mixed with citrus juice to form a bleach. Consumers, the FDA says, have reported “nausea, severe vomiting, and life-threatening low blood pressure” after consuming it, and federal prosecutors have gone after people attempting to sell it as a medicine.

The strange thing to me is how otherwise level-headed and reasonable people buy into all sorts of medicinal quackery.

The “D” Word

Hazmat is ready!

A couple weeks ago, a couple news agencies earned some Internet ire over their use of the term disease when referring to autism spectrum disorders. (See here for one example that has been since updated to remove the language.) Immediately, I saw my Twitter feed fill up with individuals decrying use of the term in reference to autism, but, objectively speaking, is the criticism justified?

Just the Facts

Following the highly scientific method of asking Google to define disease for me brought up the following definition:

1. a disorder of structure or function in a human, animal, or plant, esp. one that produces specific signs or symptoms or that affects a specific location and is not simply a direct result of physical injury.
2. a particular quality, habit, or disposition regarded as adversely affecting a person or group of people.

Furthermore, Wikipedia’s entry on disease says the following (emphasis mine):

In humans, “disease” is often used more broadly to refer to any condition that causes pain, dysfunction, distress, social problems, or death to the person afflicted, or similar problems for those in contact with the person. In this broader sense, it sometimes includes injuries, disabilities, disorders, syndromes, infections, isolated symptoms, deviant behaviors, and atypical variations of structure and function, while in other contexts and for other purposes these may be considered distinguishable categories. Diseases usually affect people not only physically, but also emotionally, as contracting and living with many diseases can alter one’s perspective on life, and one’s personality.

By these standards, an autism spectrum disorder does, in fact, qualify as a disease, and it is technically correct for a news source to use that word. However, once you move past the sterile definitions, a whole set of emotions come into play.

Stigma Versus Awareness

The challenge with classifying autism thusly is that it is a spectrum disorder with a wide variety of symptoms and related severity. The term disease infers the need for prevention or a cure, and I am confident that many individuals and families enduring through the difficulties associated with more severe autism diagnoses are comfortable with that assumption. These parents just want their child to talk; they want him or her stop self-harming; they want to know their child will be a healthy and functioning adult. They want a cure and justifiably so.

On the other end, you have a population of individuals who have grown up with and see autism as intrinsic to their or their child’s identity. It is as important a part of who they are as your race, faith, or sexual orientation may be to you. To this population, the idea that they need to be fixed is offensive, is borderline eugenics. To take away the autism would be to take away something that makes them uniquely them. This is where I am and where my personal sympathies lie.

From this perspective, the term disease conveys stigma and blocks true awareness and acceptance of neurodiversity. I can’t accept you for who you are or do my best to accommodate your individual needs if I see you as fundamentally wrong in some way. That’s what gets communicated when we call autism a disease, regardless of the actual intention.

Even the CDC careful avoids the word on their website when referring to autism:

Autism spectrum disorder (ASD) is a developmental disability that can cause significant social, communication and behavioral challenges. There is often nothing about how people with ASD look that sets them apart from other people, but people with ASD may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less.

The Takeaway

So should you use the term disease when referring to autism? While autism technically fits the description, I’d say using the word creates more walls than needed. When I heard my local radio station talk about the CDC’s findings and use the word disease, it bothered me a little — not enough to say anything, though. It’s just a word I wouldn’t use.

I’d recommend the same for anyone who writes or speaks about autism spectrum disorders. Disease alienates and stigmatizes. It may be an unintentional side effect, but it’s still there. There are better words to use, especially if we want to keep conversations and minds open as we continue to understand and discuss the diversity of needs and strategies in and for the autism community.

Autism AMA: Sensory Regulation

Back in April, I offered to participate in an Ask Me Anything (AMA) for my fellow teachers, and I responded to their questions as time allowed. It’s taken me some time to find them all as I saved my responses a variety of ways. Here is, I think, the final installment.

Erica asks:

I would love to learn more about the sensory needs. How do you regulate, knowing when there is a need?

Regulating the sensory stuff at school is tough because I can’t just head to a calming space in the middle of, say, teaching third grade. My job is very, very overstimulating, and those stimuli often manifest as physical pain. Xylophones for example – when my senses are overloading, they manifest as little needles behind my eyes. I’ve tried various ways to muffle instruments to reduce the sensory overload, but nothing has been terribly successful. I will, however, keep a lot of my lights off on any given day, and that can help.

I have a related problem of auditory prioritization. A child talking right in front of my is receiving the same amount of mental processing power as a pencil tapping across the room, the sound of the fluorescent lights, a conversation in the hallway, and the air vents. My brain is trying to process them all equally. It can make something as simple as a conversation somewhat confusing. If you’ve ever been talking with me, and I ask you to repeat yourself a couple of times – that’s likely what’s going on. Your words are just becoming disconnected phonemes lost among the sundry other sounds you are filtering out without a second thought.

I know I’m overloading when I start getting unaccountably angry. It’s like a crawling/twinging sensation in my neck and shoulders. At that point, I’m in danger of the class seeing me behave angrily (and some have), so I will often try to conclude the activity we’re on and move to something quieter – whether I’ve planned such an activity or not. Other times, if the kids are working independently, I’ll step outside my door for just a second in an attempt to “reset”. Sometimes, I may just get really quiet for a few seconds as I attempt to reset internally – but that’s a last resort as it guarantees a meltdown later to buy me a few minutes right now.

And that is a trick I’ve learned over the years. If I’m reaching social seizure point, I can sometimes defer the meltdown to a later hour. Unfortunately, that “later” is usually at home, and it’s more intense than had I simply been able to retreat when initially needed. Other self-interventions: I may keep myself weighed down with a jacket; I might keep fiddling with my Pod; I might keep my lights dimmed; I may just start playing my class keyboard.

It’s also important to understand sensory control. I might be doing something noisy – like playing a video game – that is still soothing and cathartic because I have *control* over the sensory inputs. It’s the *uncontrolled* stimuli that causes problems. An outside observer might see a contradiction when they see a kid upset by the noise in the classroom but calming down by banging on a drum. Stimulus control is an important part of sensory regulation.

Autism AMA: Headphones

Back in April, I offered to participate in an Ask Me Anything (AMA) for my fellow teachers, and I responded to their questions as time allowed. Over the next few days, I’d like to share some of those questions and answers with you.

Meghan asks:

I have had many autistic students who wear headphones because loud sounds bother them. Is this an issue for you? If so, how do you deal with it since you are around musical instruments all day? How does that affect you?

Oh, headphones. Have you seen much success with headphones? See here’s my beef with headphones – They’re touching my head. Geththemoff geththemoff geththemoff geththemoff geththemoff geththemoff! And then, they don’t actually eliminate any of the noise in the classroom; they just make things sound muddled. Softer sure, but harder to process. To recap: touching my head AND making the world even harder to understand. Made of fail in my book. Of course, every kids is different, but I’ve seen more autistic friends just grow frustrated and angry with their headphones than actually see them as a benefit.

Yes, loud sounds bothers me. But volume actually takes a back seat to quantity. See, when I’m in the cafeteria (for example), my brain seems incapable of prioritizing the sounds around me. You do it naturally. You probably call it “having filters”. This enables you to carry on a conversation with a child regardless of the other stuff going on in that setting. Me? The beep of the cash register, the lunch workers telling each other what’s running low, the verbal altercation between two classmates, the tapping of trays, the dozens of other conversations going on – all of these are trying to be simultaneously processed by my brain simultaneously. As I type this, the sound of a vent about eight feet away is every bit as loud as the sound of my fingers on the keyboard and a phone ringing in the office.

Timbre more than volume gets under my skin. Our glockenspiels (small xylophone-looking instruments with metal bars), metallophones (big xylophone-looking instruments with metal bars), and recorders (those plastic elementary wind instruments people incorrectly call flutes) can physically hurt to listen to. Add to that the variable of a large quantity of sounds happening at once, and it can cause problems with me. One of the first things I do is limit our use of my “problem” instruments. I know they may set me off, so we only use them when we have to. Second, I limit our instrumentation. Instead of arranging a song for voices and five different classroom instruments, I may arrange it for voices and two instruments. Additionally, I have modified some of our instruments to be less harsh. Several mallets have additional coverings to muffle the sound they produce, and a few of our drums are covered as well. Some of our barred instruments have additional padding under the bars to they are less resonant. They are choices made to preserve my sanity that someone else might see as reducing the musical integrity of the instrument.

If you were in my classroom on a particularly taxing day, you might notice small periods of time where I would disengage from instruction, close my eyes, and get very quiet. I was doing the mental equivalent of rebooting, letting my senses disengage for a few moments and then re-engaging them after a short recovery period. Think of it like a computer: you have too many processes open, and suddenly everything freezes and becomes unresponsive. Then you hit ctr-alt-del to see what program is causing the holdup. Or you might reboot entirely. In an autisctic child, a full reboot usually manifests in a social seizure.

Speaking of, I can also have what I call a “delayed social seizure”. Let me define that before I explain it. Social seizure is how I refer to meltdowns. Autistic meltdowns are almost always triggered by social stimuli, and when they are triggered, the individual can lose control of physical and verbal faculties. Hence the term social seizure. Delayed simply means that it’s going to happen; the meltdown is inevitable. I’m just not allowing it to happen right now. So I say to myself, “Self, you’re going down. Can we do this during lunch instead?” Self says, “Fine, if you insist,” and then I go about my day in an escalated but controlled state until I can lock my doors, turn off the lights, and shut down for a while. This took a long time to develop, and I have no idea how to teach someone else to do it.

Nothing had a 100% success rate in the classroom, but those are some of the ways I would try to regulate auditory overstimulation as well as my reaction.

Autism AMA: Literal

Back in April, I offered to participate in an Ask Me Anything (AMA) for my fellow teachers, and I responded to their questions as time allowed. Over the next few days, I’d like to share some of those questions and answers with you.

Jessica Asks:

When you were a student, did you struggle with interpreting directions in a literal sense that sometimes was not the intent behind the teacher’s directions?  If so, what was effective and what was not effective in helping you to understand and move on?

I was blessed to have some primary teachers who were always very clear in their directions, so this was a non-issue until middle school. In late elementary, I was an avid reader of Peanuts, the comic strip by Charles Schultz, and had several of his collections. In those comics, there was a running joke that Peppermint Patty would behave in a sarcastic or facetious way, and Marcie would respond: “Sarcasm does not become you, sir.” Of course, I had no idea what was funny about this, so I independently researched what sarcasm was, and I credit those comic strips with allowing me to catch onto the nature of sarcasm before it had a chance to be too problematic.

That said, I did (and still do) run into situations where I took things the wrong way. I can remember being in the mall once at about seven or eight, and I was yammering on ad naseum about the next round of G.I. Joe toys Mattel was going to release when my dad said: “I don’t want to hear another thing about G.I. Joes.” He meant to stop for that moment, but I’m not sure I ever talked to him about G.I. Joes again. I interpreted the statement as indefinite. There were other times that secondary teachers would tease me good-naturedly or make some joke that I took seriously, and I felt very hurt at the time. 

Once, my wife was describing her father’s quitting drinking, and she said: “He quit cold turkey.” I was quite confused how the consumption of deli meats might lead to alcoholism. New idioms almost always catch me unprepared, and I’ve found the most effective way for me to own their meanings is to research where they came from. Why do we say things like “quit cold turkey”, “six of one, half dozen of the other”, “the whole shebang”, and weird stuff like that to express certain ideas? If I can discover origins for these phrases and how they came to be used idiomatically, then they will seldom catch me a second time.

I still get caught today. I was inviting my team over for dinner one weekend last month when one of my colleagues asked: “Now you said we could bring furry kids too, right?” I knew she had a cat, so I responded. “Well, sure, you can bring a pet if you want. Just remember that we have a dog and a toddler—“ At which point she interrupted me to tell me she was joking, and we had a good laugh. I’m sure it was in the tone of her voice, but that was completely lost on me. I seriously thought she wanted to bring her cat over.

With instructions in your classroom, it’s important to avoid idioms or other such phrases. It’s also important to avoid indefinite modifiers, like “no more”, “never”, or “anymore”, unless you really mean it. If you see a friend doing something off task after you give directions, review the words in your head – not your intention, the actual words you said. Maybe they really are following your directions to the letter. (See that: I just used an idiom.) Repeating the directions verbatim seldom helps; you’re just saying the same thing again. Consequences are even worse because, in the friend’s mind, he or she is doing nothing wrong. The best thing to do is step back and reword your request. In no way express frustration or the idea that your little friend is doing something wrong. Just gently redirect with the directions phrased differently.

The direction might have been: “It’s time to put away books,” meaning you want your students to put their guided reading books back into their seat sacks, but you have a friend you goes over to the reading corner and begins reorganizing ALL of the classroom books. Can you see why? Now, he’s out of his seat; he’s in the wrong area; the rest of the class is ready to move on; he may give every appearance that he’s not listening because he’s so intent on doing his best to put away the books right where he knows they should go despite the fact that others in the room have put books back in the wrong baskets in the past. (And believe me, he or she knows exactly where the mismatched books are.) Try: “Oh, Jason. Thanks for working so hard in our reading corner. Now can you go and put your own book in your seat sack, so we can go to lunch?” Then you’re in a position to redirect instead of frustrate, and everyone will be happier.

Autism AMA: Neat & Organized

Back in April, I offered to participate in an Ask Me Anything (AMA) for my fellow teachers, and I responded to their questions as time allowed. Over the next few days, I’d like to share some of those questions and answers with you.

Corey asks:

Are you very neat and organized in your way? Do you have tried and true methods that non-spectrum people might benefit from?

Ah, the neat and organized stereotype. Yes, I am neat. I am much more neat than I am organized. I will clean, clean, clean – sometimes at the expense of being able to find something later. I can’t tell you how many things I’ve regretted recycling or throwing away once a cleaning rampage is over. So: neat, yes. Organized: sometimes.

To prevent this (and this may somewhat answer the second part of the question), I’ve gotten in the habit of cleaning/organizing as I go, as opposed to getting something done and organizing afterwards. If I’m grading or putting class materials together, I have have the necessary folders, binder clips, etc. already there so I can keep things organized *while* I’m working rather than after.

Another example: when cooking at home, I’ll be cleaning and putting dishes back where they go during the waiting steps of the cooking process, so, by the time I’m done cooking, I have very few dishes to worry about. In contrast, if I wait until the end to start cleaning (and there’s a huge pile of dishes), I may start cleaning so fast that I’ll put things back in the wrong place for the sake of getting it out of the way.

If you want to get organized, don’t do it all at once. All of my books, movies, CDs and games are organized alphabetically by different criteria (author, band, title, etc.). If we move a bookcase, I’ll get everything back up quickly, so it’s off the floor. Remember: neat first, then organized in my world. As I use things, I’ll put parts back into the correct order. Everything will soon be back in place, and I won’t overwhelm myself with trying to alphabetize hundreds of items at once.

Autism AMA: Diagnosis

Back in April, I offered to participate in an Ask Me Anything (AMA) for my fellow teachers, and I responded to their questions as time allowed. Over the next few days, I’d like to share some of those questions and answers with you.

Megan asks:

The APA recognizes five “dimensions” of Autism that lie on the spectrum: Aspergers, Rett’s Disorder, PDD NOS, Autistic Disorder, and Childhood Disintegrative Disorder. Where do you fall on the spectrum? When were you diagnosed, and what were the first behaviors that were presented that led your parents or teachers to refer you to a clinician?

With the APA’s publications of the DSM-5 in May of 2013, these dimensions are categorized together as Autism Spectrum Disorders. This has also changed how Asperger symptoms are diagnosed under the new guidelines. There are four main criteria, under which are numerous sub-criteria that must either be met collectively or individually depending on the category:

1. Deficits in social communication and interaction not caused by general developmental delays.
2. Demonstration of restricted and repetitive patterns of behavior, interest or activities.
3. Symptoms must be present in early childhood (May not become apparent until social demand exceeds limited capacity).
4. Symptoms collectively limit and hinder everyday functioning.)

Then the diagnosis is measured for severity. Different “dimensions” of the previously used DSM-4 would measure with different severity levels under different criteria. (As an aside, there is ongoing research that could lead to ADHD being one day reclassified as an Autism Spectrum Disorder.)

That said, most of those labels will probably be used colloquially for a few more years. Under the DSM-IV (which was the first publication to acknowledge high-functioning autism and Asperger Syndrome), I would have fallen under the Asperger’s category rather than autism largely due to having no reported language delay in early childhood. As to how I discovered this about myself – well, sit back. This is a long story.

When I was a child, the DSM-3 (published in 1980) was in full use. At that time, autism was categorized alongside mental retardation. This means a child or adult would need an IQ at least one standard deviation lower than average to be considered for an autism diagnosis. Since my IQ was and is considerably higher than 85, there was no diagnosis. I often joke that there were three main categories for children in the DSM-3: Hyperactive, Retarded, and Get Over It. Since did not fall under the first two, I was in the third. So, while I was an odd child, sometimes problematic and prone to outbursts, occasionally argumentative, antisocial, and accused of “daydreaming”, I was also very smart, organized, clean, and got good grades. So no one referred me to anything. The DSM-4 was first published in 1994, by which time I was a sophomore in high school, a little too late.

Self-realization has come in stages. The first came in high school, when (incidentally the same year the DSM-4 was to be published) I had a moment of blinding self-clarity, realizing that 1. I had next to no friends, 2. I had no idea how to *make* friends, and 3. I kind of smelled bad. Number three was easy to fix, and I’ve been quite the fastidious one about hygiene ever since. The first two were a bit harder, so I went about studying the social interaction of the species homo sapiens. From that, I discovered social habits of likable people, and I began to practice them myself. In short, I developed a character of sorts I wore in public, and I still wear him to this day. (It’s also why I’m terrible at theatre, because it has to be me, pretending to be Social Me, pretending to be this character, and then some weird Inception-level stuff happens, and I just can’t keep up.)

Stage two is really short. My would-be wife was working on her psychology degree, concentrating on neurological psychopharmacology, and I was helping her study for an exam. This was in 1998 or 1999. Suddenly, she said: “You know, you should look into autism. I think you may be autistic.” (Actually, her statement was more thought-out than that and contained evidence.) I immediately dismissed her hypothesis and went about our study session. Now this is important: If you ever want an autistic person to change their mind, you have to make them think they discovered the contradictory information themselves. This can take a long time.

Stage three happened in 2001. I entered my role as a classroom teacher and immediately thought I was going crazy. Somehow, I had managed to stay in very sensory friendly music environments all the way through my college career, including internships and student teaching placements. I was completely unprepared for how painful the sound of the recorders would be, the sheer number of transitions, the challenges involved with internally prioritizing the various stimuli happening every second in an elementary classroom setting. I was at near-panic levels every day, and I was having a hard time controlling my temper, and I had no idea why.

Stage four happened in 2003. We were putting a boy through the GEI process (which would later evolve into RTI). His name was Nick. He had been in Mary’s third grade class my first year teaching. Now he was in Kim’s fifth grade class. I liked Nick. He reminded me of myself, uncannily so. He still does in some ways. Anyway, this boy was going through the GEI process for the umpteenth time, but his parents were patently refusing to allow testing for their son. The team was gathering all of the evidence, and, while they were doing that, they were effectively making the case that I’m autistic, so I went to research individually, and found the case compelling, so I made it my mission to convince mom and dad to test. I realized, however, that a diagnosis for any child would likely mean a retroactive diagnosis for one or both of the parents, since Autism Spectrum Disorders have a high hereditary correlation.

Through working with myself and them, I developed what I called the Stages of Grief for Self-Identity, derived from the Kübler-Ross model for grief. When a child is going through the autism screening process, a parent will often see him- or herself in the rubrics. When this is the case, they have to reach a stage of acceptance before they can allow their child to receive a diagnosis. It goes like this:

• Denial: “There’s nothing wrong with my child. They’re just like me.”
• Anger: “Why are you singling out my child? Why won’t you give him/her a chance?”
• Bargaining: “Just wait a couple more years. I’m sure this is just a phase.”
• Depression: “I don’t know why I try. You must think me a terrible parent.”
• Acceptance: “A diagnosis for my child is basically a diagnosis for me.”

I’ve been through all of those, and I worked to help Nick’s parents navigate those same emotions. When his diagnosis came back as Aspergers Syndrome, I had my answer. I’ve never sought formal diagnosis. I have a ton of excuses, but no good reasons. I kind of just like things exactly how they are. It was tough enough to get to where I am that I don’t want to add any more variables that could upset my happy equilibrium.

I hope that helps you understand my journey, and maybe it can help some of you work with parents who might be living in denial land.