Tag Archives: mental-health

Acceptance as a Well Being Practice

Note: This was originally published as a chapter in the book “GAP: Autism, happiness and wellbeing” (British Institute of Learning Disabilities). It’s something that I’ve been waiting to post here for months and I guess a fitting place to leave off, since it’s kind of a summary of the my journey from diagnosis to present.

This will be my last post for a while. I’ve decided to put the blog on hiatus until my language problems are less, well, problematic. Writing even once a week is taxing my limited communication resources and as much as I’ll miss this, self-care has to be a priority for me right now.  I hope to be back at some point, though I have no idea when. Until then . . .


As a late-diagnosed autistic adult, people often ask me why I bothered seeking out a diagnosis. At age 42, I was happily married, the parent of a grown daughter, and a successful business owner. Because I was self-employed and about to complete my college degree, a diagnosis wouldn’t grant me access to additional services or accommodations.

While not necessary in any practical sense, my Asperger’s syndrome diagnosis was a turning point for me. It answered a question that I’d been asking myself since childhood: Why am I so different from other people?

That may seem like a trivial question, but when left unanswered for decades, it can become unsettling and haunting. Finally having an answer opened the door for me to do something I’d never been able to do: accept myself as I am.

Acceptance as Well Being Practice

When you grow up knowing that you’re different–and worse, suspecting that you’re defective–acceptance doesn’t come naturally. Too often, autistic individuals are acutely aware of the ways in which they don’t measure up to social norms. As a child, I knew that I wasn’t like most of the other kids and in the absence of an explanation, I assumed that I was simply doing something wrong.

Finally having an explanation for my differences forced me to challenge some long-held beliefs about myself. What if all these things that are wrong with me–I was still thinking more in terms of “wrong” than “different”–aren’t my fault?

Those first inklings of acceptance brought me immense joy. Decades of thinking I just wasn’t trying hard enough were cast in a new light. I wasn’t defective; my brain worked differently.

Getting from those nascent thoughts to a fully-realized sense of acceptance, however, was a hard and often nonlinear journey. My first instincts were to research all of the ways Asperger’s made me different. I thought if I could “fix” my aspie traits I’d finally feel like a “normal” person.

I set out to learn the intricacies of body language and making small talk. I was determined to master the correct way of using eye contact. I vowed not to make socially inappropriate comments, though I was still vague on what exactly that meant. This turned out to be an exhausting and ultimately futile undertaking.

The more I tried to fix myself, the worse I felt. The number of things I would need to learn to pass as neurotypical felt overwhelming; I was ill-suited to even the simplest of them. My husband played along as I quizzed him about social rules, eye contact, feelings, and body language. I read how-to books for aspies, etiquette guides, and even social skills books written for children on the spectrum.

Eventually I grew weary of feeling that I was failing at one thing after another. The self-consciousness and tension brought on by constantly monitoring my behavior for errors was demoralizing. With no end in sight, I gave up on my plan to fix myself.

Around the same time, I discovered a community of autistic adult bloggers. Reading about their experiences, I was surprised to discover how much I had in common with them. The books I’d read up until that point were mostly written from a male point of view and the few that were authored by women told extraordinary stories of success or lifelong struggle, neither of which I could relate to.

Autistic bloggers, on the other hand, seemed like regular people. Women like me, with average lives, writing about experiences that felt familiar. I left long, excited comments on the blog posts that spoke to me most strongly and was surprised to get friendly, thoughtful replies. There was a sense of community among the writers and their readers that was unfamiliar to me.

Too often in the past, when I related an experience in a group of people, even people who seemed remarkably similar to me, I was met with puzzled looks. It was a relief to talk about the “weird” parts of myself and have my tentative revelations met with virtual nods of agreement.

From other adults on the spectrum, I began to learn coping strategies and about the concept of neurodiversity. I learned about supports and accommodations, the social model of disability and why it’s important to presume competence. I learned that it was okay to struggle with things that come naturally to typical adults, that there was no shame in finding socializing difficult, that my autistic traits can be a source of strength.

I learned that acceptance could open the door to a strong sense of identity and pride, not only in what I’m capable of but in who I am.

What is Acceptance?

Acceptance, or more precisely self-acceptance, means unconditionally embracing yourself as you are. It wasn’t a concept I had given much thought to until I began learning about what it means to be disabled.

For most of my life, my view of myself was predicated on what I had achieved. I felt a strong need to succeed academically, professionally, athletically, and even socially, as a way of validating my self-worth. My fragile self-esteem was buttressed by a constant need to outdo myself.

My diagnosis came at a time when the demands of life were beginning to exceed my patchwork of coping strategies and workarounds. Not only was I finding it more difficult to excel at work, some days I was finding it hard simply to show up. It was clear to me that I needed new coping strategies and one of them would have to be admitting that I had needs and weaknesses.

One of the most difficult parts of understanding acceptance was the abstractness and the immediacy of it. Acceptance meant embracing myself as I am, in the present. It meant letting go of the idea that I would some day magically become a more competent, mature, socially adept version of myself. It meant acknowledging that I’m not perfect and, more importantly, I don’t need to be.

Building a Bridge to Acceptance

While there is a strong sense of before and after in my mind, self-acceptance didn’t happen quickly or accidentally. It was a nonlinear process, one that took nearly two years and a great deal of internal work.

When I was in the “before” place, unconditionally liking all the parts of myself, particularly the parts I found embarrassing or shameful or weird, felt impossible. If someone had said, “you need to accept yourself if you want to be happy,” I would have shrugged it off.

As a literal thinker, when I hear platitudes like “accept yourself,” I imagine acceptance happening all at once. I envision myself on one side of a chasm, mired in self-doubt and fear. On the other side of the chasm lies acceptance, waiting for me to leap across and embrace it.

Unfortunately, no amount of practice or effort will allow me to make that leap in a single bound. Thinking of it that way, it’s easy to give up before I even get started.

What I’ve discovered over the past two years, however, is that I didn’t need to leap. Instead, I needed to build a bridge across the chasm, one plank at a time, and walk over it.

That bridge turned out to be a series of specific steps that played important roles in helping me reach a place of acceptance. Looking back on my journey, I’ve attempted to identify the key “planks” in my bridge to acceptance.


Self-knowledge is an essential part of self-acceptance. However, some autistic individuals are missing a key piece of self-knowledge: a diagnosis. As someone who made it well into adulthood undiagnosed, I had devised many alternative explanations for why I struggled with things that seemed to come naturally to my peers. None of my explanations were positive. Often they revolved around me needing to try harder or being fundamentally incompetent in areas like social skills and communication.

The self-knowledge that a formal diagnosis gave me was the first step toward self-acceptance. In the absence of the true explanation for my differences, I would have gone on creating my own explanations indefinitely. The peace of mind that I got from having a professional say, “you have Asperger’s syndrome” was invaluable. My diagnosis allowed me stop questioning and start educating myself about how and why my brain works differently.

Through my blog I’ve talked with hundreds of adults who are either late-diagnosed, pursuing a diagnosis or questioning if they might be on the spectrum. Nearly every one of them has expressed the need to know for sure if Asperger’s or autism is the answer to why they feel different. Those who have received a professional diagnosis often talk about their lives as I do, in terms of before and after, and the validation that a formal diagnosis brings.

Late-diagnosed adults also speak of wishing they knew sooner. So many of us grew up knowing we were different but not understanding why. Today, children are more likely to be diagnosed in early childhood, presenting an opportunity for them to grow up understanding their differences and how to cope with them.

Positive but Realistic Framing

When I first began reading books about Asperger’s for adults, the information I found was discouragingly negative. If marriage or parenting was mentioned at all, it was with the assumption that people on the spectrum were ill-equipped for both. Information on comorbid mental illnesses and high unemployment rates was plentiful but there were few stories of autistic people leading fulfilling adult lives.

I started to think that I was either an outlier or not on the spectrum at all. So many of the traits of Asperger’s fit me, but the overall profile of an adult aspie? That didn’t sound like me at all.

It was only when I discovered the blogs of autistic adults that I began to see my adult self reflected in the experiences of other people on the spectrum. Perhaps, again, it was my literal-minded approach that left me feeling grim after my initial research. The books I’d read made it sound like all autistic adults were lonely, unemployed, and depressed.

In reality, I discovered autistic adults who were happily married and unemployed, single parents with full-time jobs, college students with no interest in dating, business owners who were intentionally childless–every variation of adulthood imaginable, just like nonautistic adults.

Through reading the experiences of adults like me, I began to frame autism in a positive but realistic light. Doing so helped me find my place on the spectrum. Here were other autistic people, succeeding in some parts of their lives and struggling in others, and many of them seemed not just happy but content with being autistic. They talked openly about their difficulties. They weren’t in denial and didn’t gloss over the “ugly” parts of their lives. They seemed to genuinely embrace themselves, disability and all.

This was a revelation to me. Previously, when I thought of disabled people, the emphasis was on the “dis-” part of the word, on all of the things they couldn’t do. But here was a group of disabled people who were proud of what they could do and okay with the things they found hard or just plain couldn’t do.

Identifying Needs

Soon after realizing that I was likely on the spectrum, I read a blog post by Ariane Zurcher in which she used the phrase, “presume competence and respect my process.” That was my first exposure to the concept of presuming competence, which is a cornerstone of acceptance. However, it was the second part of that phrase that really drew me up short. I realized that I needed to respect my own process. In learning to do so, I’ve grown more confident in myself, which in turn allows me to trust myself on a deeper level.

A big part of acceptance has been honestly confronting the areas of my life where I need accommodations or supports and taking steps to actively meet those needs. By default, I’m the kind of person who is “fine.” No matter how good or bad something is going, I’ll tell you that I’m fine, I can handle it, I don’t need help.

There have been a surprising number of challenges in learning to identify my needs and ask for accommodations. At the most basic level, I had difficulty knowing when I was struggling with a task or situation–and still sometimes do. When I can identify a need, my instinct is to minimize or ignore it. The “I’m fine” instinct is deeply ingrained and persistent. Learning to admit that “I’m not fine” has been hard, but therapeutic.

Another challenge is that asking for accommodations identifies me to others as different. I’ve spent a lifetime trying to be not different–blending in rather than standing out. To overcome my discomfort, I’ve had to learn that it’s okay to have atypical needs and wants or to have different needs and wants than my peers.

Simply the act of including wants with my needs when talking about accommodations has required a shift in my thinking process. At first I thought of accommodations and supports as the bare minimum changes in my life that would allow me to what was required.

With the encouragement of the people in my life who want me to be happy and healthy, I was able to see that accommodations and supports can apply to things that I want as well. For example, if I want to have an enjoyable dinner at a restaurant, I might have to ask to be seated at a quieter table away from high traffic areas. If I want to be less overloaded at a family gathering, I might need to leave the party for 30 minutes of quiet time alone.

Much of what makes my life more enjoyable isn’t a need, per se. I could get by without certain accommodations, and I have for much of my life, but I know now that I don’t have to. Understanding how my brain works differently, has helped me identify many things, big and small, that I can do to minimize my discomfort and increase my enjoyment of life.

Acceptance has allowed me to think of myself as a person whose needs and wants have value and that has contributed significantly to my happiness.

Social Support and Community

Acceptance is something that happened within me and also to me. As I came to accept myself, I found the people around me becoming more accepting of my autistic traits. There was a give and take to the process, with me becoming gradually more myself and my family encouraging and embracing the changes in me. Because I’d spent so many years trying to minimize the signs of my Asperger’s, it was difficult at first to let go of my tendency to mask these traits.

Similarly, there were times when it was difficult for those around me to process the changes that were happening. Often it seems that our family’s first reaction to an autism diagnosis or disclosure is to reassure us that there is nothing “wrong” with us and nothing has changed. While it’s true that we’re the same person before and after an ASD diagnosis, it’s not quite that simple.

I was the same person post-diagnosis, but with a powerful new piece of self-knowledge. I felt as if I was seeing myself clearly for the first time. It was important to me that my family validate that feeling. If they’d dismissed my diagnosis and subsequent changes as insignificant, I don’t think I would have gotten to acceptance as quickly or perhaps at all.

In addition to family support, acceptance can be nurtured through community. For some of us, community comes in the form of in-person support groups or attending a school where many of the students are on the spectrum. Others, myself included, find support in autistic-friendly online spaces.

Being part of an autistic community opens up the possibility of having “me too” moments. When your experience of the world is markedly different from that of most people’s, you get used to odd looks and awkward silences in conversations that would otherwise be bonding opportunities. It’s hard to describe the relief I felt the first few times another autistic person said to me, “I do that too!”

Community can also be a place to find mentors. The language and practice of acceptance didn’t come naturally at first. Learning about the fundamental concepts of neurodiversity gave me access to a new way of thinking about myself. Gradually I moved away from comparing myself to a fictional norm and began thinking more about celebrating my differences. I will always be grateful to the community elders who took the time to answer my questions and gently nudge me in the right direction.

Opportunity for Growth and Change

Acceptance has helped me grow into myself. That feels like a paradox because the self that I’ve become over the past two years already existed inside me; I’d just become very good at concealing it. From childhood, I had a sense that there were aspects of me that were socially unacceptable. Little by little I learned to hide them, creating an increasingly false version of myself.

As I grew to accept that being different is a natural part of the human condition, I felt less compelled to hide the parts of me that openly identify me as different. I began to reclaim and take ownership of my autistic traits. For example, I stim more and have found that I’m more relaxed as a result. I no longer stop myself from skipping or bouncing down the sidewalk when I’m excited. My echolalia has become a source of joy, not just for me but for my family, who I often catch smiling at my wordplay.

I’ve also learned that when I listen to myself, to those wants and needs that I’ve been working so hard to recognize, I’m much happier. Rather than force myself to socialize in ways that I find uncomfortable, I’ve come to recognize that my social needs are different from the average adult’s and that’s okay. I can decline social invitations without feeling ashamed of my inability to be comfortable in larger groups or devote time to a special interest without feeling guilty about taking time for myself.

Equipping, Not Fixing

When I write about acceptance, it is not uncommon for a parent of an autistic child to counter that they aren’t just going to give up on their child, that accepting their autistic child as they are sounds like the equivalent of doing nothing.

This is where differentiating between fixing and equipping can be helpful. When I initially set out to fix all of my autistic traits, I had unconsciously created the idea that I was broken. Fortunately there was an alternative to the false dichotomy of fixing myself or doing nothing. As I began to identify areas where I wanted to change–to improve my quality of life and struggle less with day-to-day challenges–I was able to identify ways to better equip myself.

To remind myself how important this distinction was, I carried around a simple visual analogy: I was like a firefighter about to enter a burning building. To have the highest odds of success, I would need the right tools and protective gear. This analogy also turns out to be a surprisingly easy way to explain acceptance to those who see only the options of  fixing versus doing nothing. No one would expect the firefighter to magically grow fire-resistant clothing and an oxygen tank (fixing); similarly, no one would send the firefighter into the building without his gear (doing nothing) or tell him to simply quit being a firefighter (giving up).

Learning new skills and building on our strengths equips us to cope with life’s challenges. At the same time, it allows us to continue to be our autistic selves. Fixing often has the goal of making autistic people indistinguishable from their nonautistic peers, creating the feeling of brokenness that I struggled with. Equipping, on the other hand, promotes acceptance and builds confidence by reducing day-to-day struggles and improving our quality of life.

Effects of Acceptance

Acceptance has had a number of positive long-term effects on my life. While each person’s experience will be different, the journey toward self-acceptance can:

  • Reduce self doubt by silencing the question of “what’s wrong with me?” and providing the foundation for creating a personal sensemaking narrative
  • Increase self-confidence through recognition of personal strengths and acceptance of differences and areas of difficulty
  • Build resilience to stress by encouraging the use of natural, intrinsic coping methods (i.e. stimming or special interests)
  • Promote self-care through increased understanding and acceptance of strengths and needs, and decreased feelings of self-denial or guilt
  • Foster a sense of belonging as a result of positively framing autism as a part of one’s identity


Of all the things I’ve done since being diagnosed with Asperger’s syndrome, accepting my self as I am has been both the hardest and the most fulfilling. I’d like to say that I’m done, that acceptance is like crossing a finish line, but it’s not that finite. Acceptance has been and continues to be a nonlinear process. Like the other aspects of my life that keep me healthy and happy–eating well, exercising, being mindful of my stress levels–acceptance is a daily practice and an essential part of my well being as an autistic adult.

Finding Peace in Liminal Spaces

I suspect this may be too esoteric or scattered or specific, but I’m putting it here in the hopes that it will strike a chord with some readers. My writing style is shifting as I find it harder to hold the thread of long passages of text and I’ve decided to give in to that and see where it takes me. If you’re in the mood to read something more conventional, JKP has posted an excerpt from my book in which I explain why it’s called Nerdy, Shy and Socially Inappropriate.

 I’m in an in-between place, much like the one I found myself in after learning more about Asperger’s and before getting diagnosed. If you’ve been there, you’re probably familiar with the swirl of feelings in-between places evoke–certainty and hope shot through with doubt, fear, and confusion. Determination, undercut or perhaps fueled by intermittent anger and frustration.

The in-between places are hard. We no longer quite feel like the person we were; we’re not yet the person who will emerge on the other side of this no man’s land.


Liminal (adjective):

  1. of or relating to a transitional or initial stage of a process.

  2. occupying a position at, or on both sides of, a boundary or threshold.


The spaces between, the grey areas, have always fascinated me. When I wrote fiction, I was endlessly picking at the in-between places. Perhaps because I find them so hard to stomach in real life.

I’m not good with uncertainty. Literally, my number one reason for seeking out an autism diagnosis was peace of mind. I needed to know if I was making it all up in my head / imagining myself into a neurology / selling myself a bill of goods because I’d grown weary of looking for answers.

To put my mind at ease, someone who ‘knew about these things’ would have to validate my suspicions in a way that I couldn’t do for myself. That piece of paper, I figured, would get me over the hump and out of the in-between place of “this feels right but what if . . . ?”

It did, though not quite in the way I expected. It was more anti-climax than epiphany. But it was a path to closure and closure was what I needed to get on with life.


I understand that having access to a paper diagnosis is a privilege. At least, I thought I did. Maybe I’d overestimated the depth of my understanding.

Once again I find myself stuck in an in-between place, this time with no immediate possibility of a diagnosis. Months of making the rounds of doctors and tests have told me only what is not the cause of my language difficulties.

I’m left with three possibilities:

  1. this is temporary and will resolve itself when it’s good and ready
  2. this is something serious and the evidence that would allow a diagnosis is years away
  3. this is my new normal and I should learn to live with it

Which is a bit like being told, “there’s probably nothing serious causing that limp but if there is,  we’ll know for sure when your leg falls off.”


If I’m being honest, I need to admit that number 3 on that list is true regardless of whether I’ve won the prize behind door number 1 or door number 2. Months going on years is too long a period to simply keep hoping tomorrow will magically be different.

It dawned on my last weekend that one way out of the in-between place is acknowledging that where I am now is my new normal. That is a hard conclusion to arrive at when the new normal appears so much shabbier and rundown than the old normal.

But there is no practical reward for living in an imaginary future. It only fuels that awful feeling of suspended reality and in-between-ness.


Things I am learning to hold close and be with:

  • uncertainty
  • anger
  • sadness
  • imperfection
  • fear


In the in-between place, it helps to keep reminding myself that it’s okay.

It’s okay to feel certain and uncertain, often at the same time. Feeling one doesn’t make the other untrue.

It’s okay to doubt myself, to feel insecure and crazy at times. Like the anger, fear, sadness and frustration, I can feel those things, move on when I’m ready, come back to them when I have to.

It’s okay to not have an answer. There are more unknowns in the universe than there are knowns. See also: the unknown unknown.

It’s okay to change. 2500 years ago Heraclitus said, “You could not step twice into the same river” and there’s a reason people still quote him. We are constantly changing, like it or not, accept it or not, realize it or not.

It’s okay to ask for validation and it’s also okay if not everyone I share my experience with offers validation. Ultimately, I have to punch my own ticket.

It’s okay to feel like I’m the only one who knows my experience and, at the same time, it’s okay to identify with the experiences of others, even if I don’t share their diagnosis yet or never will. Adapt what is useful applies to more than just kung fu.


Liminal   late 19th century: from Latin limen, limin- ‘threshold’ + -al.


I’ve spent the last six months looking for the threshold of this in-between space. Surprisingly, I found it in the confirmation that there would be no answer, not now.

Maybe that’s a kind of resignation. Not a giving up, but a giving in, a practical acknowledgement of reality. I’m done struggling with this thing for now. There is a kind of tired relief–a quiet sense of peace–in acceptance and I’m ready to embrace that.

For now, and for as long as I can keep hold of it.



Health Care Survey

We have two more sets of survey questions. This week’s questions are all about health care related topics. Next week is a mix of all the questions I couldn’t figure out how to categorize.

As always anyone who identifies as autistic is welcome to participate. You can answer here in the comments or anonymously at Survey Monkey.

  1. Do you have more dental issues than your peers? Do your autistic children have more dental issues? Do cleanings hurt you more than fillings?
  2. Do you find there are certain medical staff that are better at your autism disclosure than others (nurses better than doctors, blood test/ lab workers better than nurses, specialists better?) ect?
  3. Do you have a code word or phrase that helps you the most during emergency appointments?
  4. How do you manage sensory issues at the doctors?
  5. Does the anesthetic or freezing cause more pain after than not having it for fillings that do not involve the roots? Do you have unusual reactions to the freezing agents?
  6. Do you find you act more or less autistic at the Dentists? Do you prefer to disclose or leave out your diagnosis at the Dentists? Is there any trick that helps you get through the appointments?
  7. Do you go for the usual tests or do you wait them out longer because the side effects of said tests usually cause you more problems than the test themselves? ( e.g. colonoscopy, mammogram, gastroscopy.)
  8. Do you have unusual side effects to anesthetics,  painkillers or other medications?
  9. Does naturopathy generally accept you and address your issues better than allopathy?
  10. Does mental health support normally apply to you or do you find you defy the odds of symptomatic depression, anxiety etc. and need alternatives? What would you suggest to a doctor if you could in this regard?

What Do I Want?

The Scientist has proposed a 30-day experiment. He says I need to practice doing what I want to do. He says, in addition to being good for me, it will help him to get to know me better. We’ve known each other for 28 years, so this feels a little late in the game for getting to know each other better. And yet . . .

What really intrigued me about his proposal is how it might help me get to know myself better. If you’re a long time reader, you might remember that last year I wrote about how much difficulty I have figuring out what I want. I often haphazardly make minor decisions, only to find I’m unhappy with the results. Here’s an example, the one that sparked the idea for the experiment:

I tried out a new recipe for dinner last week–a light summer mix of fresh tomatoes, red onions, squash and fried okra from the farmer’s market. When The Scientist tasted it, he said the flavor was too strong for him but he’d make some pasta to toss the veggies with. Since I was already cooking, I made the pasta, and for some reason I mixed all of the veggies with the pasta instead of setting my half aside. The resulting pasta dish tasted okay, but it wasn’t what I had in mind when I chose the recipe.

After dinner I was feeling gloomy, silently perseverating. As we were sitting down to watch TV, I blurted out, “I have no idea why I ate that. It wasn’t what I wanted.”

The Scientist, surprised by how upset I was, asked why I ate it if I didn’t want it. My answer: “I don’t know.”

A longish discussion ensued. The next day. Because we’re slow to process things. One of the conclusions we came to is that I sometimes do things to please other people at the expense of own preferences. Strangely, this seems to be more of a reflex action than a conscious choice.

So the experiment is this: for 30 days, I’m supposed to do whatever I want. This is alarmingly vague.

What do I want? Decision making–even the simplest decisions–can tie me up in knots. My primary decision-making strategies:

1. What do you want? I’ve noticed that other people often have stronger preferences or are more aware of what they want or like than I am. If what they suggest isn’t objectionable to me, I’ll go along with their choice. Decision making by proxy. Simple. Efficient. And probably one of the main reasons I have so much trouble figuring out my own wants and preferences.

2. I don’t want A. By default I must want B. If someone says “do you want Chinese food or Pizza?” it rarely occurs to me that I actually want a burger.

3. This is too hard. I give up. When there are too many options, I don’t know where to start. I choose the first option that isn’t terrible. These are often the choices I end up feeling most ambivalent about.

4. I want A but it’s too much work. I’ll just settle for B. This is how I made decisions when I’m overloaded. I would love ice cream right now but going out to get it sounds exhausting so I’ll have this peach instead.

5. I want this thing and nothing else. This sounds great. It’s not. What I want is often imaginary. In my head it’s this perfect thing. In reality, it turns out to be a pale shadow of what I anticipated.

6. I want A, but I can tell you want B. If one of us has to be disappointed, I’d rather it be me. This makes me sound like such a martyr. Honestly,  it’s an annoying reflex response that I need to cure myself of. Done too often, it breeds resentment.

Writing this out helps me understand better why I often feel ambivalent or unsatisfied with minor decisions. I need new strategies. The Scientist says to try just feeling it. This is hard. I’m used to making decisions based on logic and reasoning.

But . . . 30 days of being with this question of “what do I want?” might change that. We’ll see.

A Cognitive Defense of Stimming (or Why “Quiet Hands” Makes Math Harder)

Thanks to Daniel Kahneman’s fascinating book, “Thinking, Fast and Slow” I’ve discovered the concept of ego depletion.

Coined by Roy Baumeister, the term ego depletion simply means that we have a limited pool of energy to devote to both self-control and cognitive tasks. If we devote energy to, for example, suppressing temptation, we’ll be less willing to solve a difficult math problem or run an extra lap around the track.

Baumeister did a series of landmark experiments to prove the link between self-control and our willingness to engage in difficult cognitive tasks. He found that people who were asked to resist eating chocolate cookies and candy were quicker to give up on solving challenging puzzles than those who were allowed to indulge in the sweets.

What the heck does this have to do with autism, you ask? A lot.

The types of things Baumeister tested for are all related to executive function (EF)–our brain’s ability to regulate our cognitive processes. EF includes things like planning, problem solving, working memory, attention, and initiating, sustaining and inhibiting actions. That last part is really important–that’s where self-control enters the picture.

When we look at the tasks that Baumeister asked his subjects to do, they all call on the brain’s executive function reserves. And impaired EF is a central feature of the typical autistic brain.

What’s More Important: Quiet Hands or Long Division?

Many therapists, teachers and other professionals believe that extinguishing a child’s stimming is necessary for learning to take place. Their justification is that stimming diverts the child’s attention away from the information or task. To help the child focus, they insist on “quiet hands” or “quiet bodies.” The assumption that a child can learn better if he or she suppresses stims has been widely disputed by autistic adults and by some parents, teachers and therapists.

The obvious reason for objecting to “quiet hands”-type instruction is that it shames the child for moving in a way that is natural and comforting for them. Others have written eloquently and in great depth about this subject; I’ve linked to some key pieces below rather than repeating what has already been said.

The case I want to make against “quiet hands” is that in addition to being emotionally damaging, it’s cognitively counterproductive. Think back to the experiment where the people who were told to resist eating chocolate gave up more easily on solving puzzles. Substitute stimming for chocolate and learning long division for solving puzzles. Add in the fact that autistic people have impaired executive function to begin with, making inhibition of actions more challenging, and you can see why asking a child to resist stimming is counterproductive if you’d also like them to learn a new skill.

An Illustration (or Let’s Pretend EF is Something We Can See)

To help us think about executive function in concrete terms, imagine two children in the same math class. Since we can’t actually see or measure EF in a simple way, let’s use imaginary EF “units” to talk about typical versus impaired executive function.

The typical child has 100 units of EF available for math class. The child with ASD has impaired EF, meaning s/he begins the math lesson with 70 units of EF.

Assume the typical child has to exert some self-discipline to attend to the math lesson: 20 EF units, which are devoted to things like staying seated, paying attention, and not talking to classmates. That leaves 80 units that can be devoted to learning math.

Assume the autistic child has to devote twice as much EF (40 units) to self-discipline. Not only does s/he have to do all of the things the typical child is doing (staying seated, paying attention, not talking to classmates), s/he has to inhibit the natural urge to stim. That means s/he is starting out with less EF and devoting more of that small reserve to self-discipline.


Look at the amount of EF each child has left for doing their math work. The autistic child starts off at a disadvantage and is further disadvantaged by a classroom rule that has supposedly been put in place to help him or her.

A Brief Clarification

Before you say, “but how can s/he learn math while spinning around/headbanging/bouncing up and down” let’s clarify what stimming is. Yes, sometimes stimming is all of those things, but it is also fidgeting with a toy, chewing on a chewy, bouncing a leg/foot, flapping a hand, flexing fingers, rocking gently, moving around on an exercise ball used as a chair, or any number of other things that can be done while sitting at a desk.

In fact, every time I stop typing to think of what I want to say next, I start rhythmically tapping my fingers in sequence on my keyboard. That’s stimming. I don’t think about it. I don’t do it on purpose. It isn’t a “behavior.” It happens naturally. It helps me organize my thoughts and stay on task.

It’s the opposite of a distraction.

The Cost of Inhibition

So when I say that a child should be allowed to stim and that stimming is more likely to be cognitively beneficial than distracting, that’s the kind of stimming I’m talking about. Note that in my example, the autistic child was expected to do the things the other typical children were expected to do, such as sitting in their seat and not talking to classmates. They aren’t being allowed to do “whatever they want”–an assumption some people will jump to when anyone raises the notion that autistic children should be allowed to stim.

Maybe while they’re sitting in their seat and working on their math problems, they’re also manipulating a piece of string or a fidget toy with one hand. Maybe they’re sitting on an exercise ball so they can gently roll from side to side. Maybe when they pause to think they flap their hands.

Imagine the red self-discipline portion of the graph shrinking for these kids when they’re allowed to stim while they work. When that happens, the green “solving math problems” portion can grow. When they no longer have to spend EF resources on not stimming, those resources can be repurposed for learning.

If you find it hard to imagine how difficult it is to inhibit stimming for an extended period of time, try this: imagine you have a bad case of poison ivy, you’re not allowed to put any medication on it or to scratch where it itches . . . and I’m going to teach you how to find the limit of a function as x approaches a fixed constant.

How much of that math lesson do you think you’ll retain? Would you even care?

A Few Words About Socially Acceptable Behavior

There is another argument against stimming at school or in other public places: we need to teach autistic kids socially acceptable behavior so other kids/people don’t think they’re weird. Well, I have two things to say about that.

Yes, autistic children should be taught the same social rules as typical children. They should be taught to respect others and all of the rules of politeness and civility that go along with it. But here’s the thing: I was an autistic kid and I can tell you for certain, stimming or not, the other kids already think we’re weird.

Instead of insisting that autistic children adopt unnatural behaviors for the sake of social acceptance, how about working toward changing what is socially acceptable?

**** I’ve used children as an example throughout this piece, but everything here applies to autistic adults as well.

Further Reading:

Quiet Hands by Julia Bascom

The Cost of Compliance is Unreasonable by Beth Ryan

Another Way to Silence – Shame by Ariane Zurcher

My Decision, Not Yours by Alyssa

On Stimming and why “quiet hands”ing an Autistic person is wrong by Rose

Shape Shifting

Recently The Scientist said, “I’m concerned that your world is shrinking.”

I asked him why. He elaborated. I didn’t say anything substantial in response because, as so often happens, I didn’t have a coherent answer at the time.

But that statement has been roaming my brain for the past few days, measuring my current state of affairs against times past.

Shrinking implies something that was once larger or more abundant. Two years ago I was finishing up my long-put-off university degree. I was spending three days a week on campus, surrounded by people, interacting all day, commuting an hour each way, expanding my intellectual horizons. The Scientist and I also had frequent social engagements because we lived in an area where we knew quite a few people.

Since then? I’m back to working at home. My days have a predictable rhythm: wake up, workout, write, work, eat a few times in between. Some days the car never leaves the garage. The geography of my social interaction is smaller than it was when I was going to school. Or years before that, when I was working at a job that required interacting face-to-face with people all day long or when my daughter was in school and I had to shuttle her to events and such.

There was a time in between all those other times–a time when you could say that my world shrunk very small–and I found the kind of internal quiet that I hadn’t known existed. The Scientist and I moved far away from our roots, to the desert, to a place so remote that we regularly encountered coyotes on our evening walks and the nearest gas station–the nearest anything–was a fifteen minute drive.

In that place, I found a deep internal sense of quiet. I let go of a lot of old hurts. I started to understand myself.

Of course, life gradually crept in again. We formed ties. We put down new roots. I decided to go back to school. Gradually I began to feel a creeping sense of unease. The quiet I’d found receded as I found myself having to back out of that peaceful place I’d created for myself. One by one, I backed out of the rooms in my mind, turned off the lights and closed the doors, shutting away the parts of myself that I instinctively sensed wouldn’t survive being exposed to the outside world.

Until something inside me rebelled and refused to close another door. The place I’d found–it was hard to leave and harder to close away without knowing if I’d be able to find my way back. In retrospect, that internal rebellion–the tension that arose between the security of the peaceful place I’d found and the stimulation of the outside world I was being drawn back into–was the first step toward discovering that I’m autistic.

I didn’t know that then. All I knew was that something had to give.

The tension grew in a way it hadn’t before. I became acutely aware of the two very different places I lived in. There was this new place, which existed mostly when I was alone, that felt very natural. It was secure and comfortable and, most of all, quiet. I hadn’t been in a place that internally quiet in a very long time, certainly not since I’d reached an age that had two digits in it instead of one.

Then there was the other place, the one I’d taken for granted as being life, the one where I kept a stranglehold on everything to keep it from flying apart. It was a place that pushed me to grow and expand myself, but one where I lacked the natural ease I felt in the new place I’d discovered.

I tried shifting between the two places but that turns out to be impossible for me. In typical aspie fashion, I have no idea where the middle ground is. I can be here or there, but commuting between them isn’t something I can do on a daily basis. When I do shift–like I did after my recent trip, moving from the intense interaction of being with people 24/7 for 10 days to the quiet of home–it can take me weeks to rediscover my equilibrium.

That got me thinking about where the source of that equilibrium lies. I think it lies in my true self, the one that is more fragile than I’d like to admit and that I can close off inside a nice safe cocoon when I need to, safe from harm but inaccessible.

It’s scary to realize that I can intentionally dissociate myself, scarier even to think that for years I’d been doing exactly that without consciously being aware of it. At some point–probably very early on–closing off parts of myself became my main defense mechanism, a way to survive in a world I find hard to navigate and harder to understand.

That can’t be healthy. I don’t enjoy it. I wish my quiet self was strong enough to go into the world without having to close all those doors. Perhaps the place I’m in now, this revival of my quiet period as I’m starting to think of it, is my way of nurturing and fortifying my quiet self for whatever comes next.

On my trip, I felt like I had to close off myself less than I did in the past. There are some doors I can leave ajar, some lights that I can dim instead of extinguishing. Thanks to understanding my autistic brain better, I have coping mechanisms available to me now that I didn’t before.

It may be a few years before life shifts again and takes me into a new phase as it inevitably does. For now, I’m planning to make the most of this quiet period, writing and thinking and being with myself. I think a certain amount of withdrawal from the world–a redirection of my resources–is necessary for me to expand myself internally.

Is my world shrinking?

Days later I let The Scientist know that I’d found my answer. What may appear from the outside to be smaller is on the whole simply changing shape. Again.

Adult ASD: Moving Forward After Diagnosis

This is part 12 in the “I Think I Might Be Autistic” series.

The decision to pursue a diagnosis was difficult to make. There were times when I doubted my choice. Was it necessary to have a professional diagnosis? Would it make a difference?

Having gone through the process, the answer to both questions is yes. I have a strong need for closure. I don’t deal well with gray areas and uncertainty. That piece of paper that says, “299.80 Asperger’s Syndrome” closes off an avenue of doubt for me.

It also allows me to say this: if you think you’re an aspie or autistic–if you’ve done the research and talked to other people on the spectrum and see yourself in them, if you’ve identified a long list of autistic traits in yourself and come to the conclusion that ASD describes your particular set of neurological differences–then you are very likely correct. With or without an official-looking paper diagnosis, I think we are our own best judges of our neurology.

So, yes, getting diagnosed was worth the time, effort and expense for me. Yes, I’m fortunate to be in a position to have access to the resources I needed to pursue it. Yes, I also believe that self-diagnosis can be valid.

One of the reasons I’ve written in detail about the process is because I know that not everyone can afford or has access to a diagnosis. Not everyone is ready to pursue getting diagnosed. Not everyone has the executive function or the emotional resources to run the gauntlet of medical and mental health providers. Not everyone needs or wants a formal diagnosis.

But I think everyone who has bothered to read 11,000+ words of this series probably shares my interest in self-discovery. We know that we’re different and we want to know why and how and what that means. I spent less than 8 hours with the people who diagnosed me, but I’ve spent hundreds and hundreds of hours researching and writing about being autistic. That, ultimately, is what matters most to me.

My diagnosis, though it allowed me to put one set of questions to bed, has raised plenty of others.

  • Are there things in my life that I want to change?

  • Should I go for therapy?

  • Who should I tell?

  • How?

  • What does it mean to be Autistic?

These aren’t questions I can answer conclusively, even today.

Time to Change?

Once the newness of the diagnosis began to wear off, I was faced with the question of what to do with this new knowledge. I have a 10-page report from the neuropsychologist listing my cognitive strengths and weaknesses. I’ve become more familiar with and conscious of the areas where I struggle.

I’ve been told, not for the first time, that therapy would be beneficial. It’s an idea that I keep kicking to the back of the line, intent instead on rigorous self-examination. Like everything else I write about here, that’s my personal choice and not necessarily one that’s going to be right for anyone else. I’m not even sure if it’s entirely right for me.

Slowly, I’ve been working at making specific changes. I’ve written about being more flexible, allowing myself to stim more, trying to reduce my insomnia and nightmares, learning to translate from aspie to NT and back, and exploring my emotions.

I’ve also written about the things I’ve decided need accepting rather than changing: my lack of empathy, my anxiety, my tactile defensiveness, my love of being alone. My litmus test for change vs. acceptance is simple: is the cost of changing this thing higher than the benefit I’ll gain from the change?

Some changes require little more than mindfulness or occasional reminders; other changes require me to move out of my comfort zone and face some hard truths. The outcome–or at least the goal–is that I struggle less with some aspect of my life. Those are the good changes, the ones I’m eager to make.

Other changes feel pointless to me. These are often the changes that would make other people more comfortable by making me seem less odd. With all of the things I could be working on, I don’t see the point of investing my limited energy in those types of changes.

In fact, since getting diagnosed, I’ve become more echolalic, more stimmy, less conscious of censoring myself. I’ve become gentler and more compassionate with myself. I push myself less; cut myself slack where I wouldn’t have before. Not because I see myself as disabled, but because I see myself as a person in need of care.

I never really gave much thought to self-care before. I often demanded a level of performance and perfection from myself that I wouldn’t have expected from another person. I was so busy pushing myself to be better, to get things right, that I often neglected to be kind to myself.<

Perhaps that’s the biggest change I’ve made so far: I’ve resolved to be kind to myself.

Obviously, these are very personal decisions. The constellation of things that I choose to work on changing is unique to me. It continues to shift and grow. There are days when I think, “screw this, why should I change anything?” There are days when I think it would be nice to be “normal” for a day, to not have to struggle so much with simple things.

Then there are days when being autistic recedes into the background, not because I’m less autistic, but because I’m more comfortably autistic. Little by little, I feel myself healing old wounds, integrating the shiny new realizations, and becoming more myself.

That’s the best change of all.

Up Next: Disclosure

The Seductive Illusion of Normal

Ninety-eight percent of the time I’m good with being autistic. I was going to say “fine with being autistic” or “okay with being autistic” but I don’t want to use tepid adjectives. I really truly feel good about myself most of the time.

Then there’s the other two percent. The hard, ugly, maybe I shouldn’t be saying this but I’m wishing for normal two percent.

When I was four or five years old, I wished I was a boy. Boys got to roughhouse and play cool sports and go shirtless in the summer.

I tried the shirtless thing. It landed me in trouble, though as far as I could tell I looked no different from the shirtless boys in the neighborhood. Later, I hung around the pick-up games and sometimes the older kids let me play. I learned to throw a tight spiral and catch a long pass no matter how bad it made my ice-cold hands sting afterward. Eventually, I learned to fight.

The desire to be a boy faded.

In third grade, I wished my curly hair was straight like Marsha Brady’s. All of the cool older girls-and by older I was thinking fifth graders–had straight hair. Somehow, it seemed like straight hair would magically make me popular.

A couple of years later “Farrah Fawcett hair” was all the rage, and if I spent enough time with my mother’s blow dryer and roller brush, I could feather my hair perfectly. It didn’t make me popular but it cured me of the illusion that better hair was the key to eternal happiness.

I’ve wished for other things over the years. To be taller: more clothing choices. To be more coordinated: I didn’t make the cut for high school sports. To be more feminine: I’m not sure why, exactly.


As I’ve gotten older, the wishes have become more amorphous.

Now I find myself trying to sort out where this wishing to be normal falls. Is it like wishing for Marsha Brady hair–that one elusive change that will make me magically popular? Or is it like wishing to be a boy so I can play shirtless in the summer?

Surprisingly, I think it’s more of the latter–more of a practical wish. You see, when I most find myself wishing to be normal is when I see the people around me struggling with the–well, for lack of a better term, let’s call it the side effects of my autism.

I don’t live in a vacuum. I say and do stuff. People around me are affected by it. Even though they know I struggle with certain things–they know this logically. That doesn’t prevent them from being affected by my words or actions or lack of words or actions.

This is when the wish to be normal sneaks up and grabs me.

I’m using normal and not neurotypical here for a reason. Normal is an illusion and I know it’s the illusion that I’m wishing for at these times. I’m not wishing for a different neurology so much as a fantasy version of life.

It’s easy to be seduced by the idea that being normal would solve everything, that it would make the lives of the people around me easier. But, of course it wouldn’t. We’d have some other problems instead, because life is like that.

And still it’s there, born out of frustration and insecurity, of a sense of never quite being good enough or right enough or just plain enough.

Maybe it’s a self-esteem issue. Mine has never been especially good. I seesaw between overconfidence and underconfidence, with no idea where the sweet spot in-between lies. Does anyone truly know this? I’m not sure.

I’m not sure it even matters. This will all pass. It always does.

At some point, I see the illusion for what it is, and the desire fades.

It always has.


This post is also available in Portuguese

My Anxiety is Not Disordered

Bringing this post back for this month’s Down Wit Dat T21 Blog Hop


I’ve been thinking and reading a lot about anxiety recently. When I was diagnosed with Asperger’s, I was also diagnosed with Social Anxiety Disorder.

Here’s how I feel about that: Social Anxiety? Yes. Disorder? Not so much.

Disorder implies that my social anxiety is irrational. Is it? Consider this:

“Anxiety at appropriate levels is important for adaptive functioning. There are many environmental hazards that must be avoided and these are often learned through the process of anxiety induction. The resultant anxiety response is learned through the association of certain stimuli with unpleasant consequences.” (from “Autism and the Physiology of Stress and Anxiety”, Romanczyk and Gillis)

Anxiety, like fear, protects us from danger. It raises our guard and makes us wary. In this way, it’s healthy. Without it, we might be less motivated to get an education, to work, to care for our loved ones and ourselves.


What is Anxiety?

Anxiety is a state of worry, concern or dread related to something that hasn’t yet happened and may, in fact, never happen. Think about some things that we typically feel anxious about:

  • committing to a relationship
  • giving a major presentation for school or work
  • becoming a parent
  • meeting a partner’s family
  • starting a new job
  • learning to drive
  • flying on an airplane for the first time
  • traveling in a high crime area

When you feel anxious about an upcoming event, you spend more time thinking about it and preparing for it than you would for a more mundane activity. You examine the possible consequences and give extra attention to your actions to ensure the best possible outcome. Anxiety heightens your awareness; heightened awareness sharpens your focus, increasing your safety.

It’s important to note that here and throughout this piece, when I talk about anxiety, I’m referring to appropriate levels of anxiety, not paralyzing anxiety. An appropriate level of anxiety is one that is manageable. I feel nervous in the days before giving an important Powerpoint presentation, but I manage my anxiety and complete the presentation to the best of my ability. An inappropriate level of anxiety is one that prevents a person from completing a necessary or desired activity. For example, if I got so anxious about the presentation that I ended up sick in bed, fainted in the conference room, or lied to avoid presenting.

Not all anxiety is healthy and it’s important to recognize where your anxiety falls on the healthy/unhealthy continuum.

The Function of Social Anxiety in ASD

So that’s how anxiety works in the typical brain. But what about in the autistic brain?

From childhood, autistic people know that we’re missing key information in social situations. We often have difficulty interpreting facial expressions, tone of voice, body language, and non-concrete speech. Some people also struggle with auditory processing and sensory overload in public or group settings.

The results of our social communication challenges can range from inconvenient (missing a joke or not following a conversation) to dangerous (being bullied, taken advantage of or assaulted). There are also negative health consequences–many autistic people need hours or days to physically recover from prolonged or intense social interaction.

Over time, “through the process of anxiety induction,” we realize that certain social situations are “environmental hazards that must be avoided” (as Romanczyk and Gillis described). In other words, because of a very real hazard, we develop anxiety that for us has a very real cause. It isn’t disordered. It’s a defense mechanism, developed through “the association of certain stimuli with unpleasant consequences.”

Social anxiety is, therefore, not only “important for adaptive functioning” in autistic people, it’s essential.

traffic lightRed Light, Green Light

Autistic social anxiety is not the same as neurotypical social anxiety. If a person with intact social communication abilities has severe anxiety about social situations, then they have a disorder because their fear is irrational. When a person with impaired social communication abilities has anxiety about social situations, they are like a poor swimmer who is anxious about boarding a boat. The perceived risk is real and rational.

If fear is a red light–a glowing “stop” signal in our brain–then anxiety is a yellow light. It’s the feeling that says, “slow down, caution, stop and pause a moment before continuing down this road.”

We should heed this feeling, not cure ourselves of it.

Appropriate vs. Inappropriate

But, some will say, too much social anxiety and you’ll become a recluse! A hermit! The little old lady shouting at those darn kids to get off her lawn!

Well, yes and no. First of all, allow me to horrify the more socially oriented among you by saying this: people aren’t all that interesting and the rewards of socializing are sometimes overrated. Consider the possibility that all of the following (fictional) people are meeting their needs for social interaction:

  • the person who lives alone, works at home and in the evening participates in role-playing games, an acting workshop and a drumming circle
  • the person who lives with a partner and has lunch once a week with a close friend
  • the person who attends classes full-time and prefers to socialize online in text-based formats outside of class hours
  • the person who chooses to spend time at home with family and only goes out for necessary errands or events
  • the person who works around people all day and likes to spend their evenings alone

The social preferences of these people may differ from the majority of their peers, but they aren’t exactly in Grey Gardens territory.

Being anxious about socializing is not the same as completely avoiding social situations. It’s possible to manage social anxiety in the same way we manage anxiety about other things. Someone–NT or autistic–might feel anxious about starting a new job, but that doesn’t mean they won’t do it. Most people have strategies for managing anxiety and autistic people are no different.

What is different is that our social anxiety is automatically pathologized and then “treated” with therapy or medication. We’re told that our fear is irrational and we need to change the way we “think about” social interaction. We’re told that if we just “relax a little” we’ll find social interaction much more enjoyable.

What would be far more helpful is to acknowledge our anxiety as valid and support our right to socialize at our preferred level, in our preferred ways, without being stigmatized for it.

What Anxiety Tells Us

So how does social anxiety keep us safe?

First there is the obvious example: when you have difficulty interpreting nonverbal cues, it can be hard to know when another person is a threat. This can be especially true for autistic women and girls, increasing our chances of becoming the target of sexual assault, sexual abuse or domestic violence. The autistic woman who feels anxious about dating, intimate relationships or venturing into unfamiliar situations has good reason to–the statistics for violence against autistic women are alarming.

Autistic people are also often victims of bullying. The autistic boy or girl who is anxious about recess or the school bus has a large databank of negative interactions feeding that anxiety. Their anxiety tells them that unstructured activities with limited adult supervision are a potential danger zone.

Those are both reasonable examples, right? But what about the anxiety-inducing holiday party, trip to the mall, or vacation? Surely that’s irrational?

Not if you’re forced to think about every social activity in terms of cost. There are many analogies for this concept: spoon theory and the social cup vs. bucket analogy are the most popular. I’ll spare you a new analogy and give you an example instead.

Last spring my nephew and his wife came to visit for a long weekend. He’s one of my favorite nephews and I was looking forward to meeting his new wife. Still, I was anxious. Having two additional people in the house for three days would mean a disrupted schedule, unfamiliar noises and smells, a loss of my precious alone time and lots and lots of talking.

The Scientist and I came up with a schedule–scheduling is essential for me to get through three days of company–and then I set about thinking of ways to conserve my resources. I volunteered to drive because I find it relaxing.  We scheduled downtime for me on Saturday afternoon while everyone else went out. I suggested we visit a historical site that I knew well, because it would mean a familiar environment plus the chance to infodump in a socially acceptable way.

We had a great time. They enjoyed the places we visited and the meals I cooked. We laughed a lot and had meaningful conversations. Things couldn’t have gone better. And still, Saturday night as everyone sat around the dinner table talking for hours after the meal was finished, I found myself shaking uncontrollably.

Even with all of my planning, even though I was enjoying myself, the day’s socializing had overwhelmed me. I knew it was coming, had felt myself shutting down as the evening wore on, but I ignored the warning signs. I didn’t want to end a great day on a bad note.

Unfortunately, it’s not about what I want. Social interaction has a real physical cost for autistic people. If I don’t listen to the voice of caution in my head and limit my interactions, my body will eventually take over and limit them for me.

When I’m in a situation where I feel comfortable, I can handle longer interactions. If I have to deal with unstructured activities, unfamiliar places, new people, rapid shifts in conversation partners or topics, or any of a long list of other things I find challenging, I’ll hit my limit sooner. An hour might be all I can deal with before I start feeling a strong need to escape.

Since being diagnosed with Asperger’s, I’m getting better at “reading” myself. The anxiety, the need to escape, the withdrawal that precedes the uncontrollable shaking–these are not things I need to be cured of. They are signs that I need to take care–yellow lights to be heeded–and I’m learning to listen to them.

Anatomy of a Meltdown

Last weekend, I had a meltdown and the next morning I tried to capture some scattered impressions of it to share. I’ve purposely left this raw and unedited, the way it unspooled in my head, to give you a feel for how chaotic a meltdown can be. While meltdowns are different for everyone, this is how I experience them.


A meltdown can go one of two ways: explosion | implosion.


Everything flies outward. Words. Fists. Objects.


Have you ever seen a building implode? The charges go off somewhere deep inside and for a moment you swear nothing is going to happen and then seconds later–rubble and dust and a big gaping hole in the ground.


It feels like a rubber band pulled to the snapping point.


What I don’t want to hear:

It’s okay.
(It’s not.)
You need to pull yourself together.
(I will, when I’m ready.)
Everything will be fine.
(I know.)


I’m not looking at you because I don’t want to see you seeing me this way.


It feels like the end of the world. It feels like nothing will ever be right again.


What I need:

  1. Space
  2. Time
  3. Absence of judgment


The headbanging impulse is intermittent but strong. I stave it off as best I can because:
a) my brain is not an infinitely renewable resource
b) headbanging scares other people


Meltdowns are necessary. Cleansing. An emotional purge. A neurological reboot.


Please don’t ask me if I want to talk about it, because:
a) there’s nothing to talk about
b) I don’t have the resources necessary for talking



Evolution of meltdowns over a lifetime:

For my first 12 years, I internalize well. So well that I end up in doctor’s offices and emergency rooms with mysterious headaches, high fevers, stiff necks and stomach bugs. At various times I’m told that I don’t have meningitis, migraines, appendicitis. What I do have . . . that’s never conclusively decided. Things come and go, seemingly without rhyme or reason.

Puberty hits. Hormone surges make internalizing impossible. I slam doors, sob uncontrollably at the slightest provocation, storm out of the house, crank up my stereo. My anger becomes explosive. I pinball between implosions and explosions.

Early twenties, into my thirties, the explosions become rare but the implosions grow worse. I can’t get through an emotionally charged conversation with my husband–let alone a fight–without imploding. The headbanging impulse appears. Muteness takes center stage.

My forties–I can count the explosions on one hand. The implosions are down to a couple a year at most. As the meltdowns have lessened, the shutdowns have increased. This is lateral movement, not progress.


It feels like my whole body is thrumming, humming, singing, quivering. A rail just before the train arrives. A plucked string. A live wire throwing off electricity, charging the night air.


I’m 90% successful at staving off headbanging. The thing is: when that impulse arises, headbanging feels good. It’s . . . fulfilling?


Will comforting me help?
Do I want the meltdown to be over?
Yes, but not prematurely.
Would I like a hug?
Am I in danger?
No. I’m conscious of the boundary between stimming and serious self-harm.
Do I want company?
If you’re okay with sitting silently beside me.
Can you do anything to make me feel better?
Probably not. But you can avoid doing the things that will make it worse.


Muteness: Complex speech feels impossible. There is an intense pressure in my head, suppressing the initiation of speech, suppressing the formation of language.


My meltdowns aren’t so much about triggers as thresholds. There is a tipping point. A mental red zone. Once I cross into that zone, there’s no going back.


It feels like dropping a watermelon on the pavement on a hot summer day. The bobble, the slip, the momentary suspension of time just before the hard rind ruptures and spills its fruit, sad and messy, suddenly unpalatable. And no one knows whether to clean it up or just walk around it.


A shutdown is a meltdown that never reached threshold level. Either my threshold is rising or I’m becoming less sensitive to the precursors as I age.


Meltdowns are embarrassing. A total loss of control. Humiliating. They make me feel like a child. They are raw, unfiltered exposure.


Panic. Helplessness. Fear.


Imagine running as far as you can, as fast as you can. When you stop, that feeling–the utter relief, the exhaustion, the desperate need for air, the way you gulp it in, your whole body focused on expanding and contracting your lungs–that’s what crying feels like during a meltdown.


Please don’t touch me. Don’t try to pick me up, move me, or get me to change position. Whatever position I’ve ended up in is one that’s making me feel safe. If it makes you uncomfortable to see me curled up in a ball on the floor, you should move–remove yourself from the situation.


There is emotion at the starting line, but a meltdown is a physical phenomenon: The racing heart. The shivering. The uncontrollable sobs. The urge to curl up and disappear. The headbanging. The need to hide. The craving for deep pressure. The feeling of paralysis in my tongue and throat. The cold sweat.


The physical cascade needs to run its course. Interrupt and it’ll just start all over again a few minutes later. Patience, patience.


What I need when I’m winding down:

  • deep pressure
  • quiet
  • understanding
  • to pretend it never happened


The recovery period is unstable.

Exhaustion comes first. Mixed with anger, at myself mostly, for losing control.

My filters don’t come back online right away. Unless you can handle an unfiltered aspie, proceed with caution.

Finally, there is euphoria. A wide open feeling of lightness, of soaring, of calm.