Tag Archives: diagnosis

Acceptance as a Well Being Practice

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

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


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

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

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

Acceptance as Well Being Practice

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

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

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

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

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

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

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

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

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

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

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

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

What is Acceptance?

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

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

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

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

Building a Bridge to Acceptance

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

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

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

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

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

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


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

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

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

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

Positive but Realistic Framing

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

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

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

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

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

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

Identifying Needs

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

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

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

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

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

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

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

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

Social Support and Community

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

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

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

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

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

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

Opportunity for Growth and Change

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

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

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

Equipping, Not Fixing

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

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

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

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

Effects of Acceptance

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

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


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

Finding Peace in Liminal Spaces

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

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

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


Liminal (adjective):

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

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


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

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

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

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


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

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

I’m left with three possibilities:

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

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


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

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

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


Things I am learning to hold close and be with:

  • uncertainty
  • anger
  • sadness
  • imperfection
  • fear


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

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

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

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

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

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

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


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


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

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

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



Comorbid Conditions: Diagnosis and Misdiagnosis in Autistic Women

There’s a new article today at Autism Women’s Network: Autistic Women: Misdiagnosis and the Importance of Getting it Right

The rate of being diagnosed with a co-occuring condition if you’re autistic is very high. In fact, I’m curious if there’s anyone here whose sole diagnosis is autism or Asperger’s. I have a comorbid diagnosis of an anxiety disorder and probably have mild undiagnosed OCD. The really interesting thing is that so many of us don’t feel that all of our comorbid diagnoses are a good fit. I wrote about how my anxiety doesn’t feel disordered to me and so I don’t think the diagnosis fits.

I also think it’s interesting that we’re often given diagnoses for conditions that have many overlapping traits with autism. For example, dyspraxia and sensory processing disorder share nearly all of their traits in common with autism. How do clinicians decide that one autistic person should also get a dyspraxia or SPD diagnosis while another person with a very similar profile doesn’t? I would love to hear your thoughts on this or anything related to the article in the comments here.

Also, I owe a huge thank you to the people who filled out the survey about comorbid conditions and patiently worked with me on sharing their stories for this article.  My next article for AWN will be about motherhood and the challenges that being on the spectrum can present as well as how it might affect our choices regarding childbearing. Okay, so that’s likely more than one article.

If you’d like to share your thoughts and experiences, I’ve created a short 5-question survey at  Questions about Autistic Motherhood. It’s open to both women with children and women who do not have children. As long as you identify as being on the spectrum and would use the term mother to refer to yourself if you had a child, then you’re welcome to take the survey. I’m especially interested in the question about what supports autistic moms would benefit from–if there are enough responses, that will be its own article, because I think its a subject that doesn’t get nearly enough attention.

Do We Need a Female Diagnostic Model for Autism?

I’m sure you can guess what my answer to that question is. My post this month at Autism Women’s Network, Understanding the Gender Gap: Autistic Women and Girls, outlines some key ways in which autistic girls and women often don’t fit the traditional diagnostic models for autism and Asperger’s syndrome. In part, this is because the traditional models were developed primarily by observing autistic boys.

For anyone who reads the article, I have a few questions. If you identify as female, do you think the traits I listed in the article fit you? Do you think including traits like that in the diagnostic model would make it easier for someone like yourself to be diagnosed? If you identify as male (or not female), do you feel like any of the traits also fit you?

I’m asking that last question because it also occurred to me that part of the problem with applying the current diagnostic model  to adult women is that it was developed based on autistic children. When I started researching Asperger’s syndrome, I kept coming across information aimed at screening children and had trouble seeing myself in the most commonly mentioned traits. By the time we reach adulthood, we’ve often made a lot of adaptations that conceal our autistic traits. So I suspect that some of the social traits in particular might also apply to many adults, regardless of gender. I’m also curious what other traits you think should be part of the diagnostic criteria or how the diagnostic criteria could be modified to be more inclusive.


And finally, I’m taking next week off to go visit my daughter. Enjoy the rest of November and if you celebrate Thanksgiving, have a great one!

Diagnosis Barriers for Autistic Women and Girls

I’m very excited to announce that I’ve been invited to contribute monthly articles to the Autism Women’s Network. My first piece, Hiding in Plain Sight: Diagnosis Barriers for Autistic Women and Girls, was posted today.

Thank you to everyone who shared their stories last month. It turned out that your answers to my questions were more than I could possibly use in one article. I learned so much from reading your stories. Even though I wasn’t able to quote everyone who participated, what you shared helped me to understand the issues better and I’m grateful for your insight. It’s also nice to be writing about someone other than myself for a change!

I’m in the process of developing two more articles based on the survey questions/responses so there’s a good chance that I’ll eventually include quotes from everyone who shared their thoughts.

I guess that’s it for today. Shortest post ever . . .

A Little Something Different

When I started blogging, one of the first topics I wrote about was motherhood.  Before posting, I gave the series to my daughter Jess to read because I wanted her permission before publishing such a detailed account of her childhood. I think she was a little shocked by some of what I wrote,  but she was fine with me publishing it. At the time, we talked about how it would be interesting if she wrote something for the blog from her point of view. She’s all grown up now, a thoughtful, well-adjusted adult with her own take on her childhood.

So, fast forward a year to yesterday morning.  I open my email and find that she’s sent me a post (which is right after this intro).  I was super excited because I’ve been hoping she still wanted to write something but I’m not the kind of mom who nags (much).

Also! Jess says she wasn’t sure what else people might want to know but if anyone has questions for her about being raised by an autistic mom, she’d love to answer them. You can leave comments or questions for her here or on my blog’s Facebook page. Maybe we’ll figure out some fun way to turn this into a mother-daughter conversation.

Okay, enough from me. The rest of this post was written by Jess . . .


As a student in college a few years back, I studied identity, mostly related to race, which led to a lot of writing and talking about myself. Because my father is Korean, a lot of my discussions focused on him. One day, one of my professors asked me, “What’s your mom like?”

“What?” I laughed, surprised at such a vague question.

“What is she like? Does she live with you? You don’t talk about her.”  Continue reading A Little Something Different

Monday Morning Musings (5-27)

DSM-5 Goes Live

The DSM-5 was released last week. It’s still impossible to find the full criteria online anywhere, but here’s a summary of the major changes, according to a short video on the APA website.

1. Merges Asperger’s syndrome, PDD-NOS, childhood disintegrative disorder and autism into a single diagnosis of autism spectrum disorder

2. Diagnosis is now based on two criteria instead of three:

  • Social communication (collapsing the formerly separate social and communication domains)

  • Restricted, repetitive behaviors

An interesting shift is that while social communication impairments are seen as lifelong and pervasive, RRBs are not. An adult can now receive an ASD diagnosis based on current social communication impairments and a history of RRBs.

3. The addition of specifiers like age at onset, type of onset (skill loss or not), intellectual disability, verbal impairment, and co-morbid conditions present (i.e. ADHD, anxiety disorders, epilepsy). There will also be a 3-level severity scale assigned to each of the two diagnostic criteria.

If you’re interested in how the DSM-5 guidelines might be implemented in practice I found a set of guidelines developed for pediatricians at the University of Washington hospital. Keep in mind that those are preliminary (not necessarily reflecting the final release of DSM-5 and developed by one hospital.)

Weighted Blankets: Not Just for Kids

Last month my daughter surprised me with a weighted blanket for my birthday. Look how adorable it is:


It’s big enough to cover me from toes to mid-torso when I’m lying flat (or cover me entirely if I curl up on my side), which is plenty. I’ve been using it in the evenings while I’m watching TV, when I need a sensory break during the day or after a tiring outing.

It’s emotionally calming and it makes me feel more physically organized. An unexpected benefit is that my moods are less spiky since I’ve been using it daily.

From the “Change is Hard” File

My old apartment was on the 3rd floor and my new apartment is on the 2nd floor. The first few times I used the elevator here I automatically hit the 3 button, got out on the 3rd floor and was halfway to my apartment before I realized that the numbers were all wrong.

Now when I use the elevator (which isn’t often, because 2nd floor), I tell myself “2 not 3”. The funny thing is, apparently I’ve been saying it out loud. The things you don’t realize until another person is around to look at you funny. Oops.

Hearing Motion

In the comments on one of the surveys, Robin shared a cool video that can help you identify if you experience a certain kind of synesthesia in which visual motion generates sound. I didn’t hear anything when I watched it but some other folks did.


Last week the blog topped 100,000 views and 3000 comments. Yay!

Adult ASD: My Evolving Sense of Self

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

In addition to the new set of questions that my diagnosis raised, it’s also forced me to think about my identity and how I want to own being autistic. I wrote a bit about identity very early on in this blog. At the time I challenged myself to revisit the subject in the future, after I’d had more time to educate myself and think about the labels I’ve been given.

In the past couple of months, I’ve been using autistic and aspie interchangeably to refer to myself. Not because the DSM-V will be eliminating Asperger’s but because it feels more comfortable. I’ve also been learning about the social model of disability, which says that disability is created by the way society is organized rather than by a person’s differences.

My previous concept of disability had centered on the medical model, which says that people are disabled by their differences, which need to be fixed. Because I was resistant to the idea of being seen as someone who is “less” or “defective” I was resistant to thinking of myself as disabled. The social model of disability has given me a much more positive way of thinking about disability. It looks at a person’s disability and asks what kind of supports that person needs, not what’s wrong with them.

The social model feels like a good fit for Autistic people. I don’t want to be fixed but there are some things that would make my life easier.

Learning to be Autistic

Since I’ve begun blogging, I’ve noticed that I have a constantly evolving sense of self. The more I write and read and talk with other people, the more my understanding of who I am shifts and solidifies.

Little by little, I’m learning what it means to be autistic.

You may notice that I generally use “small a” autistic rather than “capital A” Autistic in my writing. That’s intentional, not an oversight.

Autistic refers to Autistic people as a cultural group. For example, I consider my blog Autistic space–a safe space where Autistic people can gather to share information about how we experience the world. I make an effort to participate in Autistic advocacy events online, like the recent flashblogs. But I don’t feel ready yet to be an advocate in the sense that many other Autistic people are.

The funny thing is, I never thought about being advocate at all until recently. I started blogging as a way to process this huge new self-discovery. Writing has always been my primary way of processing. Big thing to process equals a need to write hundreds of thousands of words in response.

As I got involved in the online blogging community, I slowly began to realize that like it or not, I am an advocate. That’s something that I’ve come take very seriously. Words have consequences. We can lob them like rocks or wield them like a scalpel; we can use them to soothe or incite. Mostly I want to use them to understand and to promote acceptance–self-acceptance and acceptance of Autistic people in general.

I feel like I’m still learning to be autistic. This is personal for me right now. Perhaps this is my way of being an advocate–the constant dissecting and researching and writing and explaining and oversharing.

At some point I’d like to also feel comfortably Autistic, but for now, discovering my “small a” autistic self is an all-consuming process.

Adult ASD: Receiving a Diagnosis

This is part 11 in the “I Think I Might Be Autistic” series.

The day of the follow-up appointment finally arrived. As I rode the elevator up to the fourth floor, I felt my anxiety skyrocketing. I focused on breathing. I mentally rehearsed what I was going to say to the receptionist.

“I have a 2 o’clock appointment with Dr. H” isn’t complex conversation, but when I’m at a DEFCON 1 anxiety level, I can forget my own name.

The ten minutes I spent sitting in the waiting room felt interminable. I was contemplating a dash to the restroom when Dr. H poked his head around the corner and called me in.

If you want an example of how, er, unusual my conversation style can be when my social resources are low, this is the way our conversation began:

Dr. H: “Good to see you again. What’s new since you were here last time?”

Me: “You rearranged your chairs.”

Well, he had. The last time I visited, there was one guest chair facing his desk. Now there were three. That was not only new, it was messing with me, because I had to decide which one to sit in and none of the options was comfortable.

Too many chairs!
Too many chairs!

I settled on the middle chair and waited patiently while he made small talk about I have no idea what. Okay, semi-patiently. There was some discreet stimming happening. Maybe a lot.

Eventually–and I think the delay was him wanting to break it to me gently–he got around to telling me first how well I did on the cognitive testing and then that I’m clearly on the autism spectrum. I was relieved and yet somehow it felt unreal. For a moment I thought maybe I was dreaming because I’d been having a lot of dreams about the evaluation and follow-up appointment.

My nonresponse confused him, I think. Over the course of our one-hour appointment, he asked me three times how I was feeling about the diagnosis. Each time I said something like, “I guess I’m not that surprised.” I thought I’d feel something more strongly, but I was too focused on the information he was giving me about my test results to have any real feelings.

Seeing my cognitive processes summed up in a neat table of numbers and percentiles was fascinating. I hadn’t had a full IQ test since I was kid and back then no one would let me see the results.

Overall, the tests told me what I had suspected. My working memory, elements of executive functioning and verbal functioning are impaired. My nonverbal reasoning and verbal comprehension are significant strengths. The rest of my test scores fell in the average ranges.

I passed the ADHD test with flying colors, meaning that my distractibility is related to AS/executive function. This wasn’t a surprise, because my attention problems are situational rather than across the board.

The tests also illustrate how it’s possible for me to be both very literate and not very verbal. I scored highly on comprehension, spelling and vocabulary–receptive language skills or the ability to understand and process incoming words. I scored poorly on visual to verbal tasks (translating written words into speech), verbal working memory (remembering and repeating back spoken words) and verbal fluency (describing or listing words verbally). These are all expressive language skills.

There is definitely faulty wiring between my thoughts and my speech. There is a measurable  discrepancy between my receptive and expressive language capacity. It feels good to have concrete evidence.

You’ll often hear that ASD is associated with an uneven or spiky cognitive profile. While everyone has some variation in their cognitive abilities, the variation tends to be within a particular band (i.e. clustered around the 70th and 80th percentiles) rather than widely dispersed.

To give you an idea of how dramatically disparate the cognitive abilities of autistic individuals can be, I had a bunch of scores in the 98th and 99th percentiles, but I also had a cluster that included the 8th, 10th and 12th percentile. I am simultaneously off-the-charts extraordinary and bottom-of-the-barrel impaired. In yet other areas, I’m perfectly average.

One thing that really struck me in reading about spiky cognitive profiles and autism is that a profile like mine (nonverbal > verbal) is more strongly associated with impaired social skills than the reverse profile. It’s also interesting to note that the dissociation between nonverbal and verbal abilities grows more significant with age.

After reviewing the test results and confirming that I was okay with my diagnosis, Dr. H emphasized that he was most concerned about my social anxiety and felt that counseling would help me cope better with my daily life. He gave me a referral to a counselor experienced in working with autistic adults and I agreed to think about it. After thinking about it a great deal, I wrote this.

It took awhile for my diagnosis to sink in. At first, it didn’t feel real. In a way, I’d known for a while that I was an aspie. Dr. H even jokingly said at one point toward the end of our follow-up appointment, “You made a good diagnosis, doctor.”

In the days that followed, I slowly started to feel the peace of mind that I’d been craving settle in. By the time I received the written report on my tests, with its official looking diagnostic conclusions, I finally felt some closure.

Next: Moving Forward After a Diagnosis

Adult ASD: Waiting for a Diagnosis

This is Part 10 in the I Think I Might Be Autistic series. 

If you’ve read through the components of my ASD evaluation, you might be wondering but what about the Asperger’s questionnaire?

There wasn’t one. I didn’t complete a written screening or diagnostic test like the RAADS-R or AQ. My ASD diagnosis was based on the diagnostic interview, the outcomes of the cognitive/neuropsychological testing and behavioral observations made by Dr. H and B during my visit.

However, between the diagnostic interview and the behavioral observation, the key questions on the screening instruments were addressed in detail. The diagnostic interview covered questions on my special interests, relationships, social preferences, sensory sensitivities, attention, language pragmatics and fine motor skills. The behavioral observation included general presentation (grooming and dress), gait, speech (rhythm, rate and volume), demeanor, verbal skills, eye contact, movement patterns and conversation habits.

The interview and testing took about five and half hours. It was exhausting. We went straight through lunch, though both B and Dr. H told me that I could ask for a break at any time. The thing is, when I’m that engaged in something, I forget that I need to eat. I may be hungry, but the hunger signal gets muted.

So, exhausted and hungry, wishing I’d taken The Scientist up on his offer of a ride, I scheduled my follow-up appointment and stumbled out to the car. My evaluation was done. In three weeks I’d have a diagnosis.

Or not.

A vague sense of panic settled in as I started rehashing every detail of the appointment. Worse, I knew that I had three weeks ahead of me to perseverate on what I’d said and done and not said and not done. Three weeks to wonder if I’d done “too well” on the cognitive tests, if I’d instinctively made an effort to “pass” in the interview, if I’d withheld key details or reflexively covered my weaknesses.

Three whole weeks to alternately tell myself that this had been the best and the worst thing I’d ever done for myself.

The days passed about as quickly as you’d expect. I was restless and unsettled, plagued by a string of nightmares. The idea that Asperger’s might be something I’d talked myself into or imagined haunted me. My biggest fear–the one I couldn’t shake–was that Dr. H would tell me I wasn’t autistic, that in fact there was nothing wrong with me.

Then what? I’d found this explanation that fit so well. If someone “officially” took it away from me, I would be lost again, left to start over in search of a new, better explanation.

Next up: The Follow-up Appointment – Receiving a Diagnosis