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 . . .

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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

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

Conclusion

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.

(In)Dependent

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.

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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.

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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

Taking the Liebowitz Social Anxiety Scale Test

The Liebowitz Social Anxiety Scale Test is a measure of the degree of social phobia that a person experiences. Autistic individuals often have a social anxiety disorder diagnosis so I thought it would be interesting to see how we score on this test.

Before taking the test, I think it’s important to differentiate between autistic social anxiety and social phobia. Social phobia, the set of experiences on which a social anxiety disorder is based, is a strong fear of being judged by others and of being embarrassed. Generally the fear has to interfere with a person’s ability to work, attend school or generally function on a daily basis for it to rise to the level of a phobia.

A key feature of social anxiety disorder is that the anxiety experienced is irrational. For example, a person might become very anxious about going to work because they’re afraid that their boss will reprimand them in front of others even though they’re generally good at their job and their boss usually gives criticism to employees in private. In addition to the emotions associated with anxiety (fear, nervousness, dread), the person experiences strong physical sensations, like nausea, racing heart rate, sweating, and/or shortness of breath, in anticipation of the feared situation.

For a long time, I thought that I experienced social anxiety. Until I started reading about the experiences of others and discovered that my issues with social interaction are atypical for nonautistic people, but also atypical for those with social phobia.

Here’s how my social, um, issues manifest:

  • Realize that a social event is coming up in a few days.
  • Develop a background sense of dread.
  • Become increasingly irritable, withdrawn, restless and avoidant.
  • Resolve to go anyhow.
  • Get ready for the event way too early then sit around in my fancy clothes waiting for the precisely calculated minute at which I need to leave the house so as not to arrive too early or too late.
  • Forget five minutes after I arrive how much I dreaded the event or even why.
  • Stumble through the event with my usual atypical mix of being socially awkward, overly informative and very interested in anything on the periphery of the event.
  • Leave at the earliest opportunity.

I guess what I have is more social dread than social phobia. Which makes me curious how I’ll score on this test.

(This is not to say that no autistic people experience social phobia or that I don’t have specific fears around certain social situations, just that I don’t experience the more broadly defined social anxiety like I’d always assumed.)

Taking the Test

An online version of the Liebowitz Social Anxiety Scale Test is available here.

There are 24 situations presented, which are rated in two categories: fear and avoidance. You’re asked to rate each situation based on your experiences in the past week and to imagine how you’d react to the situation if it is one that you don’t usually experience.

For fear, the choices are: none, mild, moderate and severe. For avoidance, they are: never, occasionally, often and usually. If you don’t choose an option, it will default to none or never, so be sure you’ve made a choice for each to get an accurate score.

The test will take 3 – 10 minutes to complete, depending on how much you need to think about each answer.

Scoring the Test

You’ll receive a two part score, with one score for fear and one for avoidance, as well as an overall rating of your level of social anxiety.

My score was: 23(fear) + 17(avoidance) = 40

You do not suffer from social anxiety.

(For reference, a total score of 55 is the cutoff for social phobia.)

I found the two factor set-up of the test really helpful because it allowed me to say that I avoid something but not out of fear or that I fear something but generally do it anyhow. For example, I rated “fear of speaking in front of others” as severe but only avoid it occasionally. Returning an item is something that I don’t like doing, but I’ve never avoided taking something back for refund because the incentive of getting my money back for an item that I don’t need is pretty high. Public speaking is something that I’ll do when I have to, but it makes me incredibly nervous. On the other hand, “giving a party” got both “severe” on fear and “often” on avoidance.

Things like “resisting a high pressure” salesperson fall into “often” on avoidance but “mild” on fear. It’s one of those situations that I avoid because I just find them annoying (being observed when working) or a waste of time (small group activities, ack!), not because I fear them.

Thinking about each activity in terms of “how much do I dislike/fear this thing?” and “how does that feeling impact my daily functioning?” was helpful in identifying areas that I should probably work on (high fear/high avoidance items).

One potential problem for those of us on the spectrum, however, is that our social fears may not be irrational. For example, we might fear making phone calls to strangers because of difficulties with language pragmatics that make it hard to conduct phone conversations successfully. So even if our fears don’t fit the irrational aspect of social phobia, we could end up with a high social anxiety score. I think that in a clinical setting, if a therapist is using this scale with an autistic person as a screening instrument, items with high fear/avoidance scores should be interrogated more thoroughly for the underlying reasons to avoid misdiagnosis.

The Bottom Line

The situations presented cover a broad range of social situations in a way that makes it possible to separately identify feelings of anxiety and how much those feelings affect your actions, making it a practical way to identify general levels of social anxiety and specific anxiety-inducing situations.

 

Taking the RAADS-14

The RAADS-14 is a shortened version of the 80-question RAADS-R autism screening test. The 14-question RAADS-14 is intended to be a quick screening tool for clinicians, much like the AQ-10.

Unlike the AQ-10, however, the RAADS-14 is positioned by its creators for use in outpatient psychiatric screening. The validation study for the RAADS-14 was conducted on people who had a pre-existing diagnosis of autism, ADHD, anxiety disorder, psychotic disorder, borderline personality disorder, or mood disorder.

The goal of the study appears to be positioning the RAADS-14 as a front line tool for differentiating between autism and other psychiatric diagnoses whose traits might make an autism diagnosis in adults more difficult.

As with other shortened versions of screening instruments, the creators attempted to choose questions representative of the lengthier test. A pilot version was created by Swedish researchers using 18 questions distributed proportionately across the 4 domains of the RAADS-R (language, social relatedness, sensory-motor and circumscribed interests). After testing, four questions were dropped because they failed to accurately discriminate between autism and other psychiatric diagnoses.

The resulting 14 questions are organized into 3 domains: mentalizing deficits, sensory reactivity, and social anxiety. You can see which questions belong to which domain here. Honestly, the way these categories are named feels like a step backwards. The domains for the RAADS-R have fairly generic names while these new domains feel judgmental in a negative way.  Continue reading Taking the RAADS-14

Taking the Aspie Quiz (Version 3)

The Aspie Quiz was recently updated to Final Version 3, which is a major update, so I thought it would be a good idea to retake it. Much of what’s changed is behind the scenes refinement of the test items and won’t be evident to the average test taker. If you’re new to the Aspie Quiz, you might want to read my original write up for more background. This post will focus primarily on what’s new.

If you’ve taken the Aspie Quiz before, you’ll likely notice that there are some new questions and that the wording of the test result has changed. Previously, test takers received Neurotypical and Aspie scores; currently the scores are presented as Neurotypical and Neurodiverse, with an outcome of “likely neurotypical”, “likely neurodiverse” or a mix of the two.

In the context of the test, the term neurodiverse includes autism, ADHD, dyslexia, dyscalculia, and dyspraxia (and perhaps OCD and Tourettes). However, the test still appears to be primarily a test for autistic traits. This is reflected in the statement that:

The goal of this test is to check for neurodiverse / neurotypical traits in adults. The neurodiversity classification can be used to give a reliable indication of autism spectrum traits prior to eventual diagnosis.

If you want to read more in detail about the development of the Aspie Quiz and what has changed over time, Leif Ekblad has published a paper detailing his research and a detailed history of the quiz. Of particular interest is the comparison of the AQ and Aspie Quiz scores, particularly for women. As many of us who’ve taken both have noticed, the AQ has a strong gender bias and the Aspie Quiz is more gender neutral. Anecdotally, the Aspie Quiz has always appeared to be a better predictor of whether someone is on the spectrum and that is addressed in the paper as well.

There are some aspects of the paper that I found problematic, but I’ll leave that to others to critique and focus here on the test itself. Before I do that, however, there is one sentence in the paper that jumped out at me that I want to share:

The idea that neurodiversity/autistic traits lie on the extreme end of a normal distribution is not supported by Aspie Quiz, rather the neurodiversity traits seem to have its own normal distribution overlapping the normal distribution of typical traits.

For those who have wondered why they receive two scores on this test, I think the above quote sums it up nicely. It’s also a good response to the oft-repeated fallacy that “everyone is on the spectrum” or “everyone is a little autistic.”

Taking the Test

To take the Aspie Quiz, start here. You have the choice to login/register or to proceed directly to the test. If you choose the former, you’ll be contributing to the test developer’s research regarding the stability of test scores over time (assuming you take the test more than once).

Once you’ve proceeded to the start of the test, you’ll first be asked some demographic questions. The information you share is used in the development of the test and has no impact on your scoring.

The test itself is 128 questions, answered on a Likert scale. The choices are: don’t know, no/never, a little, yes/often. The test will take about 20 minutes, so be sure you have enough time to finish it before starting.

Scoring the Test

At the end of the test, you’ll get neurodiverse and neurotypical scores, along with a “likely” prediction. Here are mine:

  • Your neurodiverse (Aspie) score: 156 of 200
  • Your neurotypical (non-autistic) score: 54 of 200
  • You are very likely neurodiverse (Aspie)

You’ll also get a nice spider web graphic and the option to download a PDF with more details, which I highly recommend doing. The PDF contains detailed information about which questions count toward which aspect of your score and includes some background information that may be helpful in interpreting your scores in each category.

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On the previous version of the test, I scored:

  • Your Aspie score: 170 of 200
  • Your neurotypical (non-autistic) score: 32 of 200
  • You are very likely an Aspie

Since the last time I took the quiz, there are quite a few new questions and in particular a batch of new questions about sexuality and relationships. Given that I scored so high in Neurotypical attachment (i.e. sexuality) and relatively low in the social and contact on the neurodiverse side, I suspect the relationship and sexuality questions are the biggest factors in shifting my scores toward neurotypical.

Some of the questions in those areas were hard to answer accurately because they’re worded as if the test taker is seeking a romantic relationship or interested in dating, an assumption that doesn’t apply to either those in a monogamous relationship or those who are aromantic or asexual.

Although the quiz avoids gender bias, a few of the questions are biased in the direction of heterosexuality or presumption of asexuality as a non-neurotypical “preference”. More careful wording of some of the new relationship/sexuality questions to encompass both LGBTQ test takers and those in monogamous relationships would help mitigate some of this problem.

But I also think that the role of romantic and sexual preferences in the test outcome would benefit from a different approach. It’s stereotypical and ableist to assume that neurotypical people are sexual and neurodiverse people are not. The neurodiverse people that I know are distributed over a wide spectrum of sexuality and sexual preferences, from asexual to hypersexual and everything in between, just like the neurotypical people that I know.

Looking at the Attachment category questions in the PDF, all of the Neurotypical Attachment traits are related to sex. The Neurodiverse Attachment traits, on the other hand, are questionable in their relevance to attachment versus things like language pragmatics and learning social skills through rules. Surely neurotypical people are interested in aspects of attachment other than sex. More importantly, it’s disappointing to see a test of neurodiversity ascribing typical autistic social traits to “attachment disorder.”

Overall the new questions are much like those of the earlier version that I took: a mix of the highly relatable with the expected, plus a few that I have trouble tying back to any known autistic traits.

I was amused by “Do you have a need to confess?” because I’m so bad at lying or concealing things from people and inevitably feel the need to spill my guts at the drop of a hat. There were a few perplexing ones, including the one about walking behind people and the one about examining people’s hair. (And I still don’t get the slowly flowing water question – though I suspect it identifies people who are visual stimmers in general.) I wasn’t sure how to interpret the “afraid in safe situations” question. Maybe it’s meant to reveal phobias or irrational anxiety?

Finally, the “criticism, correction, direction” question is repeated twice with slightly different wording (possibly as a check question).

The Bottom Line

Of all the online tests I’ve evaluated, the Aspie Quiz has always felt like the most accurate in overall scoring and the most comprehensive in variety of questions and that’s still the case. I’ll be curious to see how re-takers feel about their scores and what direction, if any, scores have shifted in.

 

Chronologically Out of Step

When our daughter Jess was little, her dad and I used to take her to see a lot of animated movies. Jess and I really enjoyed them, but The Scientist often dozed off twenty minutes into the film. He slept through Toy Story and Shrek and Monsters Inc. before we all decided that a better plan was to split up when we went to the movies. That way he was free to see the latest action movie while Jess and I watched the newest offering from Pixar or Disney.

The Incredibles, Cars, innumerable sequels in the Monsters, Toy Story and Shrek series. Nightmare Before Christmas. Brave. WALL-E. Coraline. Up. Paranorman . . . Actually, I saw quite a few of those by myself. Jess is all grown up now and The Scientist still isn’t a big fan of kid’s movies. To be fair he stayed awake for the entire Lego Movie and thoroughly enjoyed Big Hero 6, but he wouldn’t have gone to see either if I hadn’t suggested it.

I imagine quite a few adults would consider my interest in animated movies that are mostly marketed to children to be childish. It certainly hasn’t escaped my notice that most of the other adults in the theater are there to chaperone children.

I’m not sure what it is about animated movies that I enjoy so much. Maybe it’s a sense of nostalgia, dating back to the time when I was a young parent and the excitement that we shared as a family going to a new movie. Maybe it’s the sly humor that the writers build in for the adults in the audience alongside the simple feel-good themes that most of the movies have. I’ve even seen it suggested that many of us gravitate toward animation because the exaggerated facial expressions are easy to decipher.

Maybe I just really like animated movies.

Whatever the underlying reason, it’s hard to escape the sense that my enjoyment of the movies is somewhat age inappropriate. I don’t know a lot of other middle-aged women who were as excited as I was about the Lego movie. I do know better than to blurt out “How about that Lego movie?” when talking with most other women my age.

Fortunately not all of my tastes in media run toward children’s programming. In fact, I wouldn’t be surprised if Netflix created a recommendation category for me titled “Dramas with Large Ensemble Casts and Lots of Cursing.” That gives me sufficient fodder for dinner party conversation when the subject turns to movies and TV.

gingerpeople2

Age Appropriate

The concept of “age appropriate” has been one that’s always haunted me. In elementary school, from about fourth grade, I began to get the sense that most of my peers seemed to somehow older than me. As if they knew something I didn’t.

By the time I got to middle school, that vague sense of being “behind” widened into a very obvious maturity gap. Many of the other girls in my class were developing an interest in dating and fashion and other things that marked a critical right of passage, and in which I had little intrinsic interest. In high school, most of my peers spent the school week looking forward to a weekend of drinking, partying, dating, football games and dances. Again I felt left out, having barely caught up with the concept of dating.

My interests ran more toward listening to music, reading, riding my bike, and shooting baskets in the driveway. At least the ones that I would publicly admit to. I also had a huge fascination with the TV show M*A*S*H and still liked to pull out my collections of baseball cards, stamps, and coins. Occasionally I pulled out my model train set or my Matchbox cars and Barbies were still in my closet. My bed was home to as many stuffed animals as it could hold and I still had a well-worn baseball mitt that I’d gotten in fourth grade.

Instinctively, I knew that there were things that it was “okay” for a teenaged girl to be interested in and interests that were best kept to myself. Sometimes the appropriateness of an interest hinged on gender stereotypes, but just as often it was related to age, either in the sense of something being “too childish” (or sometimes “too adult”) for the age that I currently was.

I spent a lot of years assuming that I would simply catch up with my peers, that I would develop an interest in partying and chasing boys at football games and gossiping on the phone for hours after school each night. When I graduated, without that ever having materialized, I somehow went right on assuming that I would catch up with the adults that I saw around me who invariably seemed much more adult to me than I seemed to myself.

I’m sure this is a typical reaction of many young people as they make the transition into adulthood in their early twenties, however I was still thinking this in my late thirties and early forties. After being diagnosed with Aspergers, I finally realized that there would be no magical catching up with my peers. I was simply different and that was okay.

By Whose Milestones?

The really interesting aspect of this to me, is that while autism is commonly referred to as a developmental delay, no one ever explicitly told me that I was “delayed.” Many years spent comparing myself to my typical peers and seeing the obvious differences had somehow caused me to assume that I was just a few steps behind them.

It’s not surprising to me that many parents look at their autistic children and make the same assumption, often with the encouragement of doctors, teachers, and other professionals in their children’s lives. And in the same way that I passed many years simply assuming that I would catch up, I think many parents spend years operating under the assumption that the goal of their children’s education should be to “catch them up” to their typical peers rather than to equip them in ways that are practical and useful for the child.

Ariane Zurcher recently wrote a blog post about how focusing on the belief that her daughter Emma was developmentally delayed caused her to pursue therapies that in the end she felt were not helpful to Emma. Here’s a quote from that post (emphasis is mine):

“for us it meant constantly comparing our daughter to her non autistic peers (using their development, and not hers, as the ideal).  It meant pursuing all kinds of therapies that never questioned the push for spoken language.  It meant not considering AAC devices, because she “had language.”  It meant encouraging my daughter to “use your words.”  It meant asking her to focus on things that made it impossible for her to concentrate on what was being taught.  It meant looking at her through the lens of deficits, so much so that they became blinders shutting out everything else.”

Ariane’s words hint at the danger that lurks in the idea that autistic kids need more than anything to catch up to their nonautistic peers. The emphasis, when working from that assumption, is on getting the child to do things in a way that may not be the best possible way–or even possible at all–for them.

A straightforward and common example is speech. Here are some standard developmental milestones for speech and language:

  • by 3 months: makes eye contact
  • by 6 months: imitates sounds and facial expressions
  • by 12 months: says 1 or 2 words
  • by 21 months: uses at least 50 words, names objects
  • by 24 months: begins to use 2 word phrases, uses simple pronouns
  • by 36 months: asks simple questions

If an autistic child isn’t making eye contact, smiling when smiled at, or saying a couple of words by 18 months, it’s very natural for their parents to look at the other toddlers who are doing all of these things and assume that their child needs professional intervention to help them catch up with their peers.

However, autistic language development varies greatly from the developmental norms. Some autistic people speak early, some at a typical age, others at a later-than-average age and some not at all. Some of us use speech for simple interactions and text or other means for more complex interactions, while others use AAC for all communication. Some of us never reach typical milestones and other leap over milestones at an atypical age.

We are each literally our own developmental milestone chart and to compare an autistic person’s language development to their peers–autistic or not–is both unfair and counterproductive.

The typical developmental milestones are useful as a diagnostic aid, but beyond that they are simply a distraction. Rather than focusing on meeting a set of speech milestones, the emphasis should be on finding communication methods that work reliably for the individual autistic person.

The Fallacy of Mental Age

Another potential pitfall of the developmental delay paradigm is that it leads to the assumption of “mental age” in those individuals who don’t meet developmental milestones on the expected schedule.

If a child is mostly nonspeaking until the age of 5, echolalic for several years after that, and begins to use short phrases at 12, some people will make the assumption that the child not only has the language abilities “of a 2-year-old” but also the thought processes and cognitive abilities of a 2-year-old. As many parents of children who began speaking at a later age can tell you, that’s far from true.

A person who is echolalic at 7-years-old, speaks in short phrases at 12 and uses some sentences at 22 isn’t simply delayed. They have a completely different communication ability than their peers. It’s entirely possible that they’ve been capable of typing in full sentences for a decade or more before they used any sentences verbally. Perhaps not, but unless they’re given the chance to learn to use a variety of communication tools other than speech, no one will know for sure.

Chronologically Out of Step

The inspiration for this post was in part a Facebook discussion that Ariane initiated prior to the post I linked to above and in part some comments on the Intersection of Gender and Autism posts here.

I was struck by how many of us had a sense that we were somehow lagging behind our peers when we were younger or how we still had interests that might be considered age inappropriate by people given to making such judgments. In each of these comments, there was a hint (or more) of embarrassment around these interests.

gingerpeople1

That got me thinking about all of the ways that I’ve felt chronologically out of step over the years and, more importantly, why. As always, the what of it is fairly easy to quantify, but the why is trickier.

Sometimes the sense that I was lagging behind was tied to not wanting to give up a special interest or to returning to a “childish” special interest for comfort. My love of animated movies and the giant stuffed dog that resides on my couch are a couple of innocuous present-day examples.

Other times, particularly around adolescence, I think missing out on big chunks of social cues and being mostly oblivious to certain types of peer pressure contributed to my sense that I was socially and emotionally younger than my peers. I suspect most kids didn’t necessarily want to start dating in middle school, but they knew that socially it was important to show that they did. It made them seem mature or cool or whatever it was that meant fitting in. Which, incidentally, was exactly the thing I could never seem to intuit and obviously still can’t quite pin down.

Most likely, there were girls who made fun of me in middle school and high school for being so out of step with what was expected but I was mostly too clueless to notice if anyone was whispering about me behind my back. And really, when you have people who will outright tell you that you’re a dork to your face, there isn’t much point in searching for more bad news.

These things, combined with the ever-present sense that I was different from most other kids left, me always feeling the need to catch up but never quite knowing how to do that.

Which brings me to an interesting point that Anna raised in the comments: there is a difference between throwing out the concept of a delay and throwing out all hope of a person learning new skills. She specifically mentioned that as a child, she was left to her own devices a lot and not really pushed to learn organizational or social skills or to further her interests in new ways. She pointed out the value of a “golden middle way” in respecting differences while helping children develop the sort of executive function skills and understanding of the social world that will smooth the road for them a bit as adults.

When Frogs Fly

Finally, it’s important for parents and others who work with autistic kids to understand the difference between, for example, understanding the social world and having neurotypical social skills. The former is achievable to some degree for many of us on the spectrum; the latter not so much.

For example, my social skills are not and never will be those of a typical adult. I don’t have the social skills of a 14-year-old or a 20-year-old or a 30-year-old. It’s not as if I’m simply behind some imaginary developmental curve. My ability to read facial expressions and body language has been “stuck” at the basic level for decades. And I’m fine with that. I have coping mechanisms to make up for some of what I lack and the rest I’ve learned to live with. In the past, I’ve tried to learn how to read more subtle nonverbal communication and finally concluded that it’s not going to happen.

In fact, as I was talking about some preliminary ideas for this post with The Scientist, I told him that teaching me to make consistently natural-looking eye contact would be like teaching a frog to fly. No matter how many times you take the frog up on the roof and toss it off, it’s never going to sprout wings. And it doesn’t need to.

———

A/N: While looking for photos to illustrated this post, I saw the gingerbread people photos and thought “ooh, cute!” and decided to use whimsical gingerbread people family portraits to illustrated my Very Serious Post because it felt delightfully age inappropriate. 

Taking the Stroop Test

I took the Stroop test as part of my ASD evaluation and I’ve seen it recently on a list of online autism evaluation tests. While not strictly an autism test, it is often part of the test battery that is given at neuropsychological evaluations for autism.

The format of the Stroop test that I took during my evaluation was:

  • verbally reading a list of color words (blue, red, green) printed in black ink
  • verbally stating the color of a series of Xs printed in blue, red or green ink
  • verbally reading a list of color words that were printed in colored ink (i.e. RED printed in blue ink or RED printed in red ink)

The Stroop test is a test of executive function. Our brain’s natural tendency is to read words that we’re presented with; noticing the color of the ink the word is printed in is a secondary priority. The Stroop test asks us to inhibit our first instinct (reading the word) in favor of stating the color of the ink. Doing so draws heavily upon the executive functions of inhibition and attention.

Because autistic people typically have impaired executive function, we often score below average on the Stroop test. The time taken to complete the test is also seen as a measure of cognitive processing speed, another area where autistic individuals will typically have a below average result.

There are quite a few other conditions that also cause cognitive “interference” on this test, resulting in below average scores, including ADHD, dementia, brain damage, depression, schizophrenia and addiction. While the results of the Stroop test can give you some insight into your executive function abilities, it’s not strictly related to being or not being autistic.

Taking the Test

You can take a mini version of the Stroop test here.  The test site is ugly and has lots of ads that you’ll have to ignore. Read the instructions in the center of the page and click the green button when you’re ready to begin. The test has 20 items and will take a couple of minutes to complete. You’ll receive your scores on the final screen of the test.

Scoring the Test

The reason I called this a mini version of the Stroop test is because it has only 20 trials. The version of the test I took at my evaluation had 300 trials across the 3 different types of tasks, with each set of 100 having a 45-second time limit.

The online version presents 15 incongruent (ink color and word do not match) and 5 congruent (ink color and word match) trials. It then gives you a score showing your congruent and incongruent results, with number correct and the average processing time for each. Generally, most people respond more quickly the congruent pairs than the incongruent pairs.

Here are my scores for the online version:

  • Congruent: 5 Correct, avg response time: 11.78 seconds
  • Incongruent: 15 Correct, avg response time: 10.20 seconds

(Admittedly I have an advantage because I was familiar with the test format and I think my scores reflect that.)

And here are my scores for the paper version (raw score, followed by percentile – in both cases higher is better):

  • Word (color words/black ink): 82, 12th percentile
  • Color (Xs/3 ink colors): 91, 27th percentile
  • Color-Word (color words/3 ink colors): 110, 75th percentile
  • Interference (calculated from other scores): 121, 92nd percentile

If you look at both sets of scores, you’ll see that I’m better at the incongruent tasks. I got higher scores on the Color-Word and Interference scores for the paper test and had a faster average response time for the incongruent pairs on the online test.

When I saw my scores from the paper test, I was shocked by how poorly I did on the first two tasks, which felt effortless when I was taking them. I have no explanation for the disparity in my performance, except that maybe when a task is more difficult, I pay closer attention and therefore do well on it. I had a similar outcome on another “easy version-hard version” test during my evaluation which supports this supposition but there may be another explanation that has gotten by me.

The Bottom Line

How useful is the online Stroop test? I think it’s more valuable as a curiosity satisfier than an actual measure of cognitive processing. First, it doesn’t have the “priming” tasks of reading the words in black ink and naming the colors of the Xs, which create performance patterns in the brain, supposedly making the color-word task more difficult.

Second, there is no overall time limit so the test taker doesn’t feel pressured to rush through as many items as possible to complete the test in the allotted time. The response time score compensates for this a bit, but there’s no mention at the beginning of the test that one is being timed.

Finally, the number of items is too few to cause the cognitive fatigue that makes the paper test challenging.

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.

At the Intersection of Gender and Autism – Part 2

Continued from Part 1

There was joy in that realization and also sadness. My diagnosis came too late to help me in my role as a mother when my daughter was young, a role that I often struggled with. Many aspects of being autistic can make the child-rearing years of motherhood challenging.

Babies have round-the-clock needs. They’re stressful, messy, unpredictable and demanding. Basically they are everything that an autistic person finds hard to cope with. Gone was my precious alone time. Gone were my carefully crafted routines. Even my body was no longer my own, transformed first by pregnancy then by postpartum hormones and breastfeeding.

I was completely unprepared for how hard motherhood would be. Unaware that I was autistic, I often felt like a bad mom. What kind of mother breaks down sobbing uncontrollably and bangs her head against the dining room wall? Certainly none that I was aware of at the time.

Perhaps knowing why I was having so many meltdowns–or even having a proper word for the those scary sobbing, headbanging episodes–would have made the early days of motherhood easier. Perhaps knowing that I have a social communication impairment would have pushed me to understand why it’s important for a mother to frequently say “I love you” to her child.  Continue reading At the Intersection of Gender and Autism – Part 2

At the Intersection of Gender and Autism – Part I

Note: This is my contribution to the Ultraviolet Voices anthology. It’s nearly 5000 words long, so I’m going to serialize it here over the next 3 weeks.  

At five, I wanted to be a boy. I don’t know what I thought being a boy meant. Maybe I thought it meant playing outside in the summer, shirtless and barefoot. Maybe I thought it meant not wearing dresses.

Dresses were all scratchy lace trim and tight elastic sleeves. Stiff patent leather shoes pinched my sensitive feet. Perfume tickled my nose. Tights made my legs itch and had maddening seams at the toes.

Too young to understand sensory sensitivities, I followed my instincts. While other girls favored frilly clothes, I gravitated toward the soft comfort of cotton shirts and worn corduroys.

Somehow, comfort got mixed up with gender in my head. For decades, “dressing like a girl” meant being uncomfortable. And so began a lifelong tension between being female and being autistic.

*

For a lengthy stretch of adulthood, I had an entire section of my closet that could best be described as aspirational. Pants suits. Dressy blouses. Pumps and sandals. Skirts, bought and worn once for a special occasion. Dresses, bought and worn never, before being spirited off to the thrift store.

I preferred ripped jeans and running shoes, hoodies and baggy t-shirts. Comfortable and comforting, just as they had been in childhood.

Continue reading At the Intersection of Gender and Autism – Part I

one woman's thoughts about life on the spectrum

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