Tag Archives: acceptance

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.


A/N: This post is raw and more of a collection of thoughts than a coherent whole. I’m posting here as a signpost to myself. It’s definitely intended to be a comprehensive commentary on the subject of independence and disability. 

 I. Theory, Background, Questions and Concepts

What is the relationship between being dependent and being independent? Certainly not the opposites that we assume at first glance.


There are common themes that you’ll encounter if you read enough autism parenting-related blogs and comments:

“My child is severely autistic and will never be able to live on their own.”

“My child is going to depend on me for the rest of their lives. They’ll never have the skills to live independently.”

The assumption that dependent and independent are opposing states is implicit in these types of statements. A person who lives on their own is considered independent by default; a person who needs the support of others to conduct their daily life is dependent. Little acknowledgement is given to the gray areas of reality.


Consider this scenario:

My elderly neighbor lives alone.

Based on this statement, you’d assume he’s independent, right?

How about this scenario:

My elderly neighbor, who lives alone, is in poor health. He has daily visits from Meals on Wheels and a health aide. A maid service comes every other week to clean his house, a lawn service keeps up his yard, and various neighbors drop by daily to bring in his newspaper and check on him.

Is he still independent? Dependent? Something else we’ve failed to consider?

Oh, wait, I know what many of you will say . . . we’re all interdependent. This is true. Few of us make our own clothes or grow our own food or generate our own electricity. Even those of us who are able to cut the grass or clean the house might hire someone who can do a better job of it.

Does that mean some of us are more interdependent than others? That independence and dependence are fictional extremes where no one actually lives?  Continue reading (In)Dependent

At the Intersection of Gender and Autism – Part 3

The final post of a three part series (read Part 2)


While many of the intersections of autistic and female in my life have been social, there are undeniable physical intersections too.

The arrival of adolescence brought with it hints of what it would mean to be an autistic adult. My first real meltdowns. My first experience with depression. My first confusing encounters with physical intimacy.

With nothing to compare those experiences to, I assumed they were a normal part of being a teenager. Everyone said that being a teenager was hard. I couldn’t dispute that. It didn’t seem necessary to look beyond the explanation of “this is hard for everyone.”

That would become a theme. Pregnancy. Breastfeeding. Postpartum depression. My body’s reaction to birth control pills. Countless books and magazine articles assured me that these things were no walk in the park. Not knowing that I was autistic, I had no idea that I might be having a rougher time of it than the average woman.

It wasn’t until I hit menopause–and the hormonal fireworks that come with it–that I finally realized something was different. Not just with how I was responding to the hormonal changes of perimenopause, but with how I was coping with life in general.

At first, I had no idea that perimenopause had begun. It creeps up slowly and because I was barely out of my thirties, the word menopause wasn’t part of  my vocabulary. What I noticed, instead, was that I was having a lot of difficulty coping with the daily demands of life. It was harder to concentrate on work. I wasn’t sleeping well and felt tired all of the time. I was moody and quick to cry over the silliest things. But the most surprising development was a new resistance to socializing. Being around people I don’t know well had always been uncomfortable, but suddenly it felt exhausting.

Ultimately, thanks to the hormonal changes of perimenopause, my autistic traits became too obvious to ignore. This led, in a roundabout way, to my realization that I’m on the spectrum. And that feels like a fitting sequence of events, because the cognitive challenges of menopause are turning out to be much greater than the physical symptoms. Yes, the irregular periods and night sweats and sleep disturbances are hard. But it’s what’s happening in my brain–the way “the change” is changing my cognitive function–that’s taken center stage for me.

Forgetfulness, concentration problems, anxiety, fatigue and mood swings are often listed among the “other symptoms” of perimenopause. Thanks to my autistic brain, I already experience those things to a greater degree than the average woman. Menopause has ramped up the intensity, but I’ve had years to develop coping strategies.

The “symptom” I’ve been struggling the most with is one that you won’t find on any typical list of symptoms. Three years into perimenopause, my language processing has developed some glitches. When I write, I leave out words and make odd substitutions. Speaking is an adventure in trying to remember which noun I’m looking for.

At first, I thought maybe my brain was broken in some new and scary way. When I blogged about my worsening language glitches, I was stunned to hear from dozens of autistic women in their forties and fifties who had similar experiences. Other discussions on menopause revealed more common ground. I wasn’t the only who was suddenly tired of the effort it takes to pass for “normal.” I wasn’t the only one having more meltdowns or struggling to cope with day-to-day responsibilities. There were a lot of “me too” replies, too many for them to be a coincidence.

The autistic female body is fundamentally different, it seems. We start out with an atypical baseline. Add in hormonal fluctuations and we get Menopause: The Deluxe Bonus Edition. Thankfully, I finally have what I lacked during those other hard stages of my life: community. I have other women–women like me–whose experiences I can look to for comfort and wisdom.


Throughout my life, being autistic has shaped my experience of being female. But how has being a woman shaped my experience of being autistic?

Because I’m new to being autistic–that is, to knowing I’m autistic–this is a harder question to answer. My autistic traits are an indelible part of me and always have been. Whether I was aware of them as autistic or not, they influenced me at every stage of my life. Now that I recognize their autistic nature, I can look back and see how they have made me who I am.

Perhaps the greatest impact of gender has been that it helped to cloak my autism. I grew up in a time before Asperger’s existed. Children of my generation were much less likely to be diagnosed with autism if they could speak and were in a mainstream classroom.

My teachers realized early on that I was different from the other kids. They labeled me gifted and designed a special curriculum to keep me busy. They enrolled me in the town’s gifted classes. They tasked me with helping out the reading specialist and the librarian. They even tried to skip me over a grade, a move that my parents wisely blocked, reasoning that my already painfully shy nature would put me at too big a disadvantage with kids two years older than me.

Even as an adult, autism was a hard explanation to consider. I skirted it for years, buying into the Rain Man stereotype, not seeing myself in the descriptions of boys who loved airplane engines and men who had no social lives. It wasn’t until I discovered Tony Attwood’s writing that I realized there is more than one way to be autistic.

Girls can be autistic too. In fact, there was a detail in Dr. Attwood’s book that made me gasp out loud. In explaining how autistic girls often have interests that appear to be the same as typical girls, he described how one of his patients liked to play with Barbies, but instead of making up pretend scenarios for them, she enjoyed lining up the dolls and their clothes.

I felt like I’d been struck by lightning. I had a huge collection of mostly hand-me-down Barbies and their clothing and what I most loved doing was laying all of the items out on my bedroom floor and sorting them by type. I had far less interest in dressing the Barbies or sending them on dates than in ensuring that each of them had exactly the same number of dresses and pants and shirts and shoes. I could spend hours sorting and distributing their clothes. Once that was done, I’d play with them for five minutes and pack everything away until next time.

If an adult walked by and glanced in my room, they would have seen a little girl playing with her dolls. Only if they’d watched carefully would they have noticed that I did the exact same thing every time. Classic autistic behavior camouflaged in a girly disguise. If I’d been a boy with a love of sorting batteries or radio parts, my autistic traits may have been more noticeable.

As girls, we learn to hide in plain sight. We hover at the fringes of social groups, giving the impression that we have friends. We sit quietly through years of school, creating the illusion of shyness. We let older girls take us under their wings, mothering and mentoring us in the social skills that they sense we’re lacking. We learn that there are rules and we set out to master them as best we can. We learn that we have roles to play and we struggle to fill them, often at the cost of our self-esteem.


Coming to understand that autistic girls and women have somewhat different traits than autistic boys and men made it clear, finally, that there was a place on the spectrum for me. Not only that, there were other women like me, other women who shared similar traits and experiences.

I’d spent decades feeling like I was an anomaly and suddenly here was an entire community of people who understood.

As I’ve read the experiences of other autistic women, I’ve come to realize why autism is described as a spectrum condition. As autistic people, we share much in common but we are also different in many ways. No one is autistic in exactly the same way that I am. This has given me permission to be me–to see myself on the broad spectrums of womanhood and humanity–and to embrace myself as I am.

I’d like to say this is a done deal–I’ve accepted myself and now I can move on, brandishing my shiny new self-image. Perhaps that will be the case one day, but for now, I am a work in progress. Each time I think “yes, this is it, I’ve got it now” I soon find myself unpeeling a new layer, discovering some aspect of myself that I’d tucked safely away.

In the past year I have rediscovered the joy of stimming. I have unearthed a playfulness within me that I thought was lost. I have begun to learn how to share my feelings and speak up for myself and identify my wants and needs. I’ve opened up doors inside me that I was once frightened of even approaching.

There is a joy and a terror in this kind of self-discovery that is akin to the best roller coaster ride ever. Again and again I find myself nervously climbing that first hill, anxiously anticipating the first drop and then, finally, with a shout of joy, giving myself over to the thrill of the ride.

Unreasonable Goals

When I was researching language pragmatics for my recent echolalia and scripting post, I came across an IEP goal bank. For those of you who aren’t familiar with these terms, IEP stands for Individualized Education Plan, which is a personalized document that describes an educational program designed to meet the needs of a child who is enrolled in special education. It includes, among other things, information about current performance, annual goals, services, accommodations, and progress.

Presumably to make these unwieldy documents easier to create, there are databases (goal banks) of scripted goals and objectives (sub-tasks of goals). One can search the goal bank for items that can be inserted into a child’s IEP with a small amount of customization. Of course, I couldn’t resist digging through the databases to see what types of goals autistic children are being asked to meet.

It quickly became obvious to me that I, as a 45-year-old autistic adult, could not consistently meet many of the social and communication goals and objectives that autistic elementary school students are expected to achieve. As I kept digging, patterns began to emerge.  Continue reading Unreasonable Goals

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.



What Acceptance is Not

Parent A: I love and accept my autistic child just as she is.

Parent B: So you’re just giving up on her?

Acceptance is not giving up.

 Parent A: I love and accept my autistic child just as he is.

Parent B: How can you just do nothing? My son gets at least 30 hours of behavioral therapy a week plus all-day preschool and adaptive sports and OT and PT and . . .

 Acceptance is not doing nothing.

 Parent A: I love and accept my autistic child just as she is.

Parent B: I love and accept my child too! After 5 years of ABA, daily social skills training, and a star-chart-sticker-reward-gummy-bear-timeout-management system validated by an elite team of MIT scientists you can’t tell she’s any different from the other kids in her mainstream class.

 Acceptance is not what happens after you’ve fixed someone to your liking.

 Parent A: I love and accept my autistic child just as he is.

Parent: You mean you’re fine with raising a feral child who runs wild through the streets in his underwear, smeared in the remains of the chocolate bars he eats for breakfast, lunch and dinner?

 Acceptance is not throwing away all rules, manners, education, skills and coping strategies.  Continue reading What Acceptance is Not

I Don’t Need Your Awareness

Awareness is trendy. Everywhere you look people are raising awareness about things. Sometimes even things they know very little about.

For example, here’s a 2-minute awareness video titled “Listen” that is intended to “inspire positive change through a deeper tolerance and understanding” about autism (Trigger/Seizure Warning for flashing graphics, loud abrupt sounds).

Do you feel more aware? Do you understand what it’s like to be “a child who is non-verbal” and an “extreme case” (in the words of the producers)?

No, you don’t. How do I know this? Because the people who made that video don’t know what it’s like to be a nonverbal autistic child.

Neither do I, of course. I am not and nor was I ever a nonverbal child. Only a nonverbal autistic child or someone who was once a nonverbal autistic child understands what it’s like to live that experience.

I am autistic, however, and I know that my vision is just fine. The world is not blurry to me. People and objects don’t fade in and out of focus. I don’t see blank objects or perceive the world in flat 3-color animations.  Continue reading I Don’t Need Your Awareness

The Logical Fallacy of Person First Language

The problems with person first language have been talked about extensively in the autistic community. Many autistic people have expressed a strong, explicit preference for identity first language. And yet, we’re still treated to comments like this one (paraphrased from a comment on another blog):

I work with children with autism and I always say child with autism because they’re children first and autism doesn’t define them. Also, I say typically developing child instead of normal, because normal has negative connotations. Words are important–they reflect how you think.

My first reaction to reading that type of comment is always, “aren’t the typically developing children also children first?”

Or do we just not need to be reminded that they’re children?

If you don’t use normal because it has negative connotations, does the same logic apply to the use of autistic? Or does autistic exist in some special category of word that’s not bad but also unspeakable?

I fail to see why it’s okay to use the identity first descriptor “typically developing child” but not the identity first “autistic child.” Why do we constantly need to be reminded that the autistic kids are people? Is it so easy to forget? I would hope that no matter what label I use to refer to myself it be would obvious that I’m a person.

Anyone who needs to constantly remind themselves that disabled people are people should probably spend more time examining their own beliefs and less time telling other people how to speak about themselves or their children.

Using person first language to refer to autistic children and identity first language to refer to typically developing children isn’t inclusive. It’s othering and unnecessary.

Person first language arose because disabled people were being referred to by demeaning and pejorative terms that had an identity first construction. In some communities, where a preferred identity first term hasn’t arisen, person first is still the preferred construction.

Autistic people, however, have repeatedly expressed a preference for identity first language. For some reason, nonautistic people who think they know better continue to ignore our (loudly and oft-stated) preference. To those people I say, “If you truly believe we’re people, first or otherwise, then listen to what we’re  saying and respect our preference.”

Autistic is not a dirty word. When you act like it is, you aren’t helping  autistic people. You’re contributing the very stigma that you pretend to abhor.


One of my wonderful readers brought this post to the attention of the folks at the Yeah Write Writer’s Challenge it was made an Editor’s Pick. I even got some swag. 🙂

#Autismisnotacrime Flash Blog

Today Gretchen Leary is hosting a flash blog with the theme #Autismisnotacrime in response to the recent (and not so recent too) stigmatizing media portrayals of autism and autistic people.

I’m low on words but after reading some of the ongoing coverage of the UCSB shootings, I made a couple of graphics:


 Image description: Green text on white background that reads “Autism is:” followed by four choices that read “Not having friends, Being withdrawn, A lack of empathy and A neurological difference.” The first three phrases are struck out and the last phrase has a check mark next to it. Below the choices is the text “#autismisnotacrime”. 



 Image description: Green text on white background that reads “Aspergers is:” followed by four choices that read “Not having friends, Being withdrawn, A lack of empathy and A neurological difference.” The first three phrases are struck out and the last phrase has a check mark next to it. Below the choices is the text “#autismisnotacrime”. 

**Because the news articles of the past two days are using the Aspergers label almost exclusively, I made graphics that use both Aspergers and autism. Feel free to share/use either or both.


Behavior is Communication: Are You Listening?

Behavior is communication.

This has become a catchphrase in the autism community. And for good reason. It’s certainly true.

A child runs from a store and experts assure the frustrated parent that behavior is communication.

A parent asks for advice about why their recently diagnosed child bursts into tears at bathtime and experienced parents nod in sympathy. “Behavior is communication,” they say.

A child refuses to eat anything but raw carrots and pancakes and the child’s occupational therapist isn’t the least bit surprised. Behavior is communication.

A child flaps at a wind-up toy that’s stopped moving and the experts . . . somberly intone that the child doesn’t know how to communicate . . . that he isn’t aware of the adults around him and is “trapped in his own world”, unable to share his joy with others.

An adult walks away from an autism researcher who is treating him as less than competent, preferring instead to tend his garden, and . . . cue the tragic music as the researcher looks on gravely and the viewer is made to believe that the autistic adult simply doesn’t know how to have a proper conversation.

What’s going on here?

Why is certain behavior treated as communication and other behavior treated as a failure to communicate, often in the same person?

Somehow a phrase that started out as a positive step toward understanding autistic behavior in the absence of language has become associated primarily with meltdowns, self-injurious stimming, eloping and other obvious signs of distress.

Why is that? Do autistic people only communicate distress through their behavior?

In case the answer to that question isn’t obvious: No, we communicate a whole range of emotions and messages. But much of it seems to get lost in translation.

That toddler flapping at the wind-up toy? It looks to me like he’s saying, “that was fun, do it again!” It’s not his fault that the so-called experts in the room don’t speak autistic as a second language.

Going Beyond the Obvious

Meltdowns. Elopement. Biting. Hitting. Crying. Refusing to eat certain foods. These are not the only autistic behaviors that are communication.

Stimming is communication. It’s not enough to simply assume, “this person is stimming so they must be stressed or anxious.” Sometimes stimming is about anxiety or sensory overload. But it’s about so much more than that, too.

My stims are a language unto themselves. I have a stim for every mood, and while the physical movements may sometimes be similar, the feelings that go with them are distinctly different. My happy flapping is different from my grossed out flapping. My excited bouncing is different from my nervous bouncing. The autistic body is constantly communicating and it’s saying so much more than “I’m in distress.”

“Lack of communication” is communication. Autistic attempts to interact with others are often overlooked because they are atypical.

Did you know that an autistic person may express interest in something by studying it for a long time rather than directly engaging at first? Many of us like to understand how all the parts of an object work or how a person responds in different situations before we feel comfortable interacting. And persistent questioning, monologuing, or echolalia–often dismissed as unidirectional communication–are all signs that an autistic individual is seeking to connect.

Eye contact (or lack thereof) is communication. But it’s not the kind of communication that most people assume. If I’m staring off to the side while you’re talking to me, that’s a sign I’m intensely concentrating on what you’re saying. And if I’m making intentional intermittent eye contact? I’m more focused on “passing” to avoid looking odd than I am on listening to what you’re saying.


And that’s just one simple example of how using a neurotypical “dictionary” to interpret autistic behavior and body language can lead to chronic miscommunication. Understanding that behavior is communication is a good first step. But it’s not enough to look at autistic behavior and guess, based on neurotypical experience, reasoning and cultural norms, what that behavior means or doesn’t mean.

Only through accurate translation of autistic behavior can real communication occur.

For that to happen, autistic individuals–including autistic children–need to be allowed to communicate a broad range of messages in the ways that are natural for them. Forcing a child to make eye contact or to stop flapping is the equivalent of forcing them to speak a foreign language. It’s telling them that if they want to use behavior to communicate more than distress, they’ll have to speak another language because theirs is substandard and the people around them can’t be bothered to learn it.

“Behavior is communication” has to apply to more than just a small subset of behaviors or it’s no better than “quiet hands” masquerading as acceptance.

This post is part of the 2014 Autism Positivity Flash Blog happening today