“… scores on the CAT-Q indicate she engages in a significantly higher level of camouflaging than neurotypical people and elevated camouflaging even when compared to other autistic individuals. It is highly likely that she has camouflaged so much and for so long that she fails to see some of her autistic traits even though they may appear obvious to others.”
This week I was formally diagnosed as Autistic.
But I’ve been autistic my entire life.
When I was a little girl and throughout my teen years, I hid my rocking from the other girls during sleepovers. Hiding the rocking got to be a problem in college while living with roommates and even more challenging to hide it as an adult. The only one who has never shamed me, or even commented on my rocking is my son. Maybe it’s because throughout his early years, I would hold him in my arms and rock him as I rocked myself, but just maybe it’s because he accepts me for exactly who I am.
I have rocked myself to sleep since I was an infant – since before I can consciously remember.
I rock when I am tired, anxious, or sick.
I rock when I am relaxed.
I rock when I’m not even aware of my body’s movement, unconsciously rhythmically rocking back and forth as I am engrossed in a movie or as I sit in silence with my thoughts.
I have rocked my entire life.
The Early Years
When I was a little girl, my younger brother and sister assured me that there was a tiny man called “Mr. Hooper” who lived on the side of our house behind the plumbing access. I naïvely accepted this tale as fact. For weeks on end, they would send me into the house to fetch snacks, and only just after I’d left, would Mr. Hooper ‘appear’.
They told me that Mr. Hooper wouldn’t come out for me because he didn’t like me. I believed them and I cried.
My mother clued me one day after she heard my younger siblings teasing me through an open window as I wailed and sobbed because I had just missed the elusive Mr. Hooper again.
I have two degrees, am a good mother, an accomplished professional, an advocate and activist, an avid writer, and a skilled therapist who mentors others. And to this day I am so literal that I often can’t understand jokes, GIFs, or memes. I have to watch people’s facial expressions or really pay attention to the emojis they use on social media to figure out how I am supposed to respond.
When I was a young girl, I would often sob profusely, howling over ‘nothing’, (although the ‘nothings’ definitely meant something to me).
I would burst into tears, completely overwhelmed with the enormity of my emotions, or when life didn’t exactly measure up to my (per everyone else) heightened sense of justice or fairness.
“Life’s not fair, Julie,” my mother would say.
My family viewed these bursts of emotion as “drama-queen” behavior. Looking back, I think my young mother was probably baffled by her eldest child’s behavior, and quite possibly overwhelmed with the job of dealing with my big feelings. I distinctly remember a couple of times, to get me to stop crying, she mimicked my crying, using harsh, exaggerations of my facial expressions and sobbing noises she hoped would enlighten me on how dramatic I appeared to everyone else.
With the exception of my son, I have been called ‘overly emotional’ in every important relationship in my life.
I gradually learned to keep big feelings stuffed up on the inside and quiet on the outside most of the time, and over the years I have somehow lost the ability to recognize how I feel about a lot of things when I am in the moment. But I will easily cry when I see another human who is suffering or in pain, completely flooded with empathy, so much so, that it is difficult not to get swept up with the enormity of my feelings.
I took to apologizing for having such big feelings. I still do that sometimes.
As a child, my spoken language was judged ‘bossy’ and ‘rude’ as I defiantly screwed up my face and pointed out facts, the broken rules, and inaccuracies, or the inconsistency, injustice, or unfairness of a situation.
I was a ‘justice warrior.’ Still am.
I would frequently insist to my brother and sister that, “Mom said… blah, blah blah.” when they broke the rules or didn’t pick up after themselves or do their chores.
I actually knew all of my mother’s rules, and since I was a good girl, I followed all her rules.
From my perspective, if our mother had been in the room at that moment when my sibling broke a rule, she most certainly would have said the same thing I was saying anyway; so my truth was the truth in my mind. I was helping, you see.
My siblings would taunt and mimic my tone of voice and rigid facial gestures, my bossiness and forcefulness, and my annoying too-self-assuredness about what mom would have said.
My mother was forever drawing my attention to my “tone’’ and reminding me that I really needed to change it so that people would like me.
And I did everything I could think of to change that much-hated tone because I desperately wanted to be liked, but I never ever got the hang of it, even after decades of trying.
In a conversation I had with my mother this week, as I shared my diagnosis, she recalled that as a child, I would rehearse what I planned to say to someone behind the door before I entered a room.
She said she never understood why I did that.
My inability to clearly state a message and simultaneously moderate my tone haunted me and I wanted to get it right.
When I was a child of 10, I spent an entire 5th grade of recesses reading books by myself on the side of the schoolyard.
It seemed to me that my friends had changed over that summer, and when we all returned to class I was suddenly left out of the birthday and slumber parties and other outings in which I had previously been included since kindergarten.
I found myself isolated and confused, and often invisible. The conversations I attempted with my peers weren’t “cool” enough, or even relevant to their 5th-grade interests. I started reading Judy Blume, and the other tween authors of the day, and I gradually worked out over the following years the definition of each grade level’s “cool” (or at least a passing facsimile).
Fortunately for me, my home life was comforting and loving. My mother made sure that we did things together as a family and kept treasured routines like watching Battlestar Galactica together, complete with a picnic on her huge bed every week, all of us piled up together, munching and watching the show.
Routines were a gift – Summer Tuesday nights at the drive-in, pre-holiday trips to the Somis Nut House, frequent trips to the same beach, and Disneyland at least once a year. We took vacations together to the Redwoods, and the Sequoias, and attended concerts and the ballet. And we pushed back the kitchen table and we danced to disco music. These are some of my favorite memories.
My siblings and I were close when we were young. We were encouraged by our mother to pursue our interests and as a family, we discussed things such as world events and politics that my friends never brought up. From an early age, I learned about activism from my mother, accompanying her to nuclear power plant protests, as well as protests for migrant farm-workers’ rights. These lessons have stayed with me.
As I began to be left out more and more by my peers that 5th-grade year, I grew to believe that it was because I needed to try harder to be acceptable, and then the kids would like me. I am not sure that my mother even knew there was an issue. I had perfect grades and was the teacher’s pet, so as far as she was concerned, everything was fine. And since the tone of my voice continued to be the bane of my existence and a source of irritation to my family, I understood that there was something wrong with me. And I was ashamed. And I vowed to be better.
We moved right before 6th grade started, so I entered a brand-new school for my last year of elementary.
Sixth grade was just… hell.
That was the year I slowly started pulling my hair out, one strand at a time as I sat in a classroom with a teacher who was full-out cruel to me and a class full of peers who either ignored or bullied.
I only stopped pulling out my hair when my mother noticed I had a bald spot on the top of my head the size of a half-dollar.
As an adult, rather than pulling out my hair, I run my fingers through it, over and over, for sensory feedback.
It was incredibly traumatic for me to go bald when I lost my hair to chemotherapy a couple of years ago, as I had no way to get that specific tactile calming comfort when I needed it. The misery I felt at not having hair to run my fingers through is indescribable. The hair grew back, thankfully.
When I moved up to Junior High and the seventh grade, I started the second new school of my life. I was figuratively and literally lost on an enormous campus jam-packed with students.
I don’t remember much about 7th grade, except that I ate the same peanut butter and jelly sandwich on a daily basis for lunch. I had to get to school early so I could pre-order it from the cafeteria each morning – a special sandwich especially made for me. The consistency of this lunch afforded some semblance of predictability in a 7th-grade world of unpredictability.
The summer right before eighth grade we moved once more, to a beautiful house with a pool across the valley. I was starting a new school for the third year in a row with unknown peers who knew nothing about me. That year, I got involved in choir and drama where I found myself in a circle of girls, existing on the fringe, and completely enamored with the leader of the group.
I was included once again in after-school activities, parties, and sleepovers, and although I was sometimes still bullied by mean girls, I now belonged to a clique. I copiously copied the girls’ styles, and clothing and adopted their hobbies and their tastes in music and television, and made them mine.
My astute mother surprised me one day with a pair of Chamin de Fer jeans, gifted to me for no other reason than because she understood the cruel, tacit popularity rules of adolescent mean girls. She also understood that my Dittos just wouldn’t cut it on this side of the valley.
I was so happy that I cried tears of joy and gratitude for this pricy present, and I couldn’t wait to wear them to school the next day.
But when I walked into math, one of the cheerleaders noticed my new apparel and caustically said, “Welcome to the 80’s”.
Everyone in her proximity laughed, so I laughed too.
Because I didn’t know how I was supposed to respond.
The joy I had felt that morning with ‘blending’ quickly dissipated into a shame spiral.
At the end of 8th grade, to the casual observer, it would appear that I was doing great. – A salutatorian who spoke at 8th-grade graduation, an overachiever with As and the occasional B, a pretty girl who was in several plays and musicals and had a lead part in a couple, it looked like I belonged. But underneath it all I knew I was an imposter who was faking her way into these things, just waiting to be found out. And I was anxious all the time.
By the time I entered 9th grade, through my well-honed techniques of carefully studying the class favorites and copying them, I now had a loose grasp on the concept of ‘popularity’ (or at least had figured out how I could inhabit the peripheries of the more popular cliques, and live life as a princess in the B-cliques).
The High School Years – aka ‘Masking 101‘
- I habitually, consciously pretended to be much less intelligent and much sillier than I felt on the inside. This was a lot of work so I was exhausted at the end of each day.
- I rarely participated in activities that truly interested me because I did what my friends wanted to do.
- I participated in the school band as a flag team member and had to work much harder than most to learn the dance steps and the movement because dance and movement didn’t come naturally. I participated only because my friends from drama and choir had tried out, but it more work than fun for me. I left the team after the year ended.
- I signed up for clubs so I could say that I belonged, but didn’t actually enjoy them. In fact, I loathed going to some of the meetings, but I went anyway.
- I practiced keeping my opinions and my intelligence to myself (most of the time, anyway), deferring to boys or the reigning Queen-Bs.
- I focused on making my external “presentation” pleasing (hair, makeup, clothes, grades, social and school activities) while hiding my real and obviously much less-pleasing self from others.
- I studied hard and taught myself how to be an exceptional people-pleaser, especially a boy-pleaser – doing everything I could to twist and shape myself into a female adolescent who would be considered “appealing” to others – based on my looks, grades, activities that were ‘acceptable’, and practicing girly social skills.
It was absolutely grueling to keep it up.
One of my high school boyfriends told me that the way I stood was ‘much too masculine’. Immediately mortified, his comment stung for weeks and I felt self-conscious for the rest of the time we dated. It never dawned on me that he was a judgmental jerk. I just took his comment to heart and tried to fix my ‘problem’. That was 38 years ago and I still remember it like it was yesterday.
When I was in 9th grade I successfully ran for and won the position of 9th grade Class Secretary.
The Class President and his friends who held the other class positions would purposely leave me out of cabinet meeting notifications.
I never understood why.
And when the time came for the yearbook picture to be taken, they didn’t tell me. They actually replaced me with one of their girlfriends in our class cabinet yearbook photo. My replacement’s name and photo are forever in my yearbook as 9th grade Class Secretary, even though I had been the one elected.
I was both incensed and incredulous with the injustice of it all, but what’s worse is that I didn’t even understand how it had happened. And I felt powerless to do anything about it.
(Nor did I understand why the adults running the place permitted it – but that’s another article for another time: ‘The neurotypical adults in education who get their jollies through allowing neurodivergent kids to be bullied by popular kids.’)
Early College Years – aka ‘Masking for Experts‘
When I was 17 and a freshman, I pledged one of the most popular sororities at my university – quite easily and effortlessly because my “presentation” was pleasing. I knew nothing about sororities, but I worked hard to do everything they asked. I lasted only three and a half months in that pledge class.
No one ever told me why I didn’t make it through the pledge process to become an official ‘sister’. I was just summarily dismissed one day by my ‘big sister’ in a quick conversation right after the Christmas break, and then never heard from her again.
When the other pledges would talk about all the drama going on inside the house, I literally had no idea what they were talking about. I couldn’t remember everyone’s names anyway, and many of the sisters were indistinguishable to me, their faces and their big hair all blending together, so I constantly mixed them up. I seemed to miss the unspoken signals that should have alerted me to exactly what was important to these girls who quickly rejected me only a few short months after welcoming me in. I could never grasp the pecking order or the social dynamics of a sorority. Looking back, this is still strange to me, considering I was constantly observing them, carefully studying the details, so I could copy what they did to blend in.
Living in a Neurotypical World as a Neuordivergent Adult
As an adult, people’s perception of my social skills has waxed and waned. In every job I have held, from an early job at the YMCA as a camp counselor who was rapidly promoted into a director role, and as a corporate regional clinical educator who was quickly moved into national compliance director-level role, I have swiftly moved up the company ladder into leadership and management, with each position having more responsibility, salary, and prestige than the last, because I am someone who can be counted on.
I am such a hard worker in fact, that at times I have worked myself into serious illness and exhaustion (burnout) in the pursuit of pleasing my supervisors in exchange for my physical health and mental well-being.
These are good “social skills” to have if you work for people who value productivity over everything else.
All of my job performance reviews have been stellar – mostly because I am rule-follower extraordinaire as well as a cracker-jack researcher, and I Get. Stuff. Done. (Hello monotropism!). But I am painfully aware that my ability to fake neurotypical social skills after the interview is finished, all day long, day after day, is something I really struggle with. It’s not a natural way for me to communicate. And I can never let my guard down. It’s exhausting.
My lived experience is that my spoken and written social skills, as well as my unconscious facial gestures and body language, erase all of my other abilities, achievements, and even my gifts, in the eyes of the neurotypicals who are running this world.
To me, this is ableist and unfair. To a social skills ‘expert’, it’s a cold fact of life and it’s my fault.
I am broken, in their clinical opinion, and gravely in need of fixing.
It takes a lot of focus and effort for me to chit chat and to make polite conversation when the primary goal is to socialize. And for the life of me, I have never learned to flirt. I can talk for days about something I am interested in, but exchanging pleasantries for an’ appropriate’ amount of time is draining.
I never realized that getting straight to the point in a conversation was unusual, a “deficit” if you will, until I became a speech-language pathologist and was taught that using direct communication all of the time is a deficient form of social interaction (by neurotypical clinical standards).
My style of social communication became a pathological condition when I became a speech-language pathologist.
Over the years I taught myself to consciously make the effort to keep my mouth closed when it’s not my turn to talk, lips tightly sealed, anxiously watching for any signs of boredom from the group because I might inadvertently slip into a monologue. I live in a constant state of anxious hypervigilance, understanding that my social skills are ‘offensive’ to neurotypicals (and even to some of my autistic professional peers as well), despite trying my level best to not be so. It’s absolutely exhausting, and the anxiety produced from trying to perform socially is stressful to the point of inducing physical illness at times.
To this day, I still forget to do the ‘small talk’ before launching into a serious work discussion. I find it incredibly difficult and quite frankly, boring to talk about the mundane or superficial things everyone else seems to find fascinating, such as the weather or the sports.
I absolutely dread company team building events – all of the fake “bonding” activities employees are made to do in order to prove that they are team players. I routinely miss those unspoken social nuances of company culture that others seem to easily pick up, and despite my constantly scanning others. I don’t know how to “read a room.”
I fail spectacularly with these things at times, even though I have been a successful, licensed, ASHA-certified speech-language pathologist for 22 years and am “qualified” to train social skills for a living.
Work-Life: The only job skill that matters is ‘Soft Skills’.
Just ask the social skills company owners – they’ll tell you!
Throughout my 40s, I worked in the corporate world of healthcare compliance. I had compliance investigative responsibility for over 200 rehab units across the nation.
One day my boss called to inform me that I was going to be enrolled in Social Skills Training for employees.
He went on to say that he sincerely appreciated my direct and literal communication style, my knowledge and application of compliance, my excellent research skills, my personal and professional ethics… He said that he’d hired me specifically because he ‘respected strong women who tell the truth’.
But, he’d been made acutely aware by his operations peers that I was ‘too direct’, ‘blunt to the point of rude’, that I seriously ‘couldn’t read a room’, and horror of horrors, that I followed the compliance rules too closely and too literally as a rehab corporate healthcare compliance director (at a company that was under a CMS CIA, I might add) so I wasn’t a ‘team player’.
I had obliviously been under the impression that I was doing my job, being helpful by providing facts, rules, regulations, and citing the laws in discussions surrounding compliance related matters and in associated emails, because, well,
First, it was literally written into my job description, and
Second, it was my understanding that the company leaders needed this information to make good compliance decisions.
My manager ended the conversation by assuring me that he valued me and that he valued the skills I brought to the table, but if I wanted to “survive” in this company I needed to take those social skills classes.
What I learned about myself that day:
I had outstanding job skills pertaining to healthcare compliance (investigative, analytical skills, research, report writing) but my to-the-point communication style, my fact-finding habits, and my literal interpretation of rule-following and application of healthcare compliance regulations were offensive, so my other skills and talents didn’t count.
I was gutted.
It’s no wonder that there is a much higher rate of anxiety, depression, and suicidal ideation among the Autistic population. We are routinely ostracized and repeatedly informed that we are not good enough, that we are damaged, deficient. The essence of who we are, our neurodivergence is offensive. And the neurotypicals believe that it’s our fault. My fault.
Because if only we would try harder we could be accepted…
I flew to corporate headquarters when the time came, and diligently applied myself to studying and mastering the ‘social skills’ materials. I attended and actively participated in every single educational session (alongside all the other ‘quirky communicators’ and ‘social delinquents’ in my very large company). I flew back again the next week and finished the course.
Then, armed with this knowledge, I systematically began applying the “rules” I had been taught. Using the exact words I was told to say – starting each conversation and emails exactly how they were suggested in the materials. I stil use their lingo today. But, despite really working hard at it, I was simply unable to master the art of delivering messages in a neurotyical manner.
I completed the social skills training and made extraordinary attempts to apply the things I learned. I did my level best to socially perform as I had been trained. And I failed.
Side note, Reader:
I recently listened to a “neurodiversity” podcast where the speakers promoted Social Skills Training as a pro-neurodiversity practice.
The neurodiversity-championing speech-language pathologist whose podcast it is, and the guest, who is a social skills company owner and an SLP as well, informed the audience that the appropriate application of ‘soft skills is more important than any other job skill.
Some of the more odious comments from the Social Skills company owner:
“The neurotypicals aren’t the only ones in the room with the egos”.
“What they (Autistic people) expect from others is unrealistic”.
“They (Autistic people) don’t realize they are being offensive”.
“My clients are too literal.”
“If you ‘look neurotypical, we are going to judge you more harshly – There is no forgiveness factor.“
Their message to Autistic people is that we are unacceptable to neurotypicals. ‘We don’t keep our bodies and brains in the group and we don’t think with our eyes’. And if others think we ‘look neurotypical’ then we will be judged all the more harshly
The key takeaways from this ‘Neurodiversity Podcast’:
At no time on this neurodiversity podcast was it suggested that neurotypicals be educated about or be accommodating to neurodivergent differences.
Neurodiversity acceptance is not an option in their neurotypical world, especially if one owns a company that sells social skills products, programs, and CEU events.
One long-lasting result of my stint in social skills classes is that I now exist in a state of chronic social anxiety, especially in work and professional environments, because regardless of my intentional endeavors to be ‘friendly’ and light, and trying to remember to smile as I interact, it’s obvious that I can’t perform socially in a convincingly enough neurotypical manner.
I still forget to make the small talk first before diving headfirst into the meeting topic. I have been called “too serious”, “too strict” on issues like ethics, fraudulent billing, patient or student rights, neurodivergent rights, social justice, “too much of a stickler” for following the laws, rules, or regulations. I am direct and often I am literal. I tell the truth.
To this very day, I will still agonize as I write and read and then re-read emails and texts. If it’s work-related or professionally related, or if the receiver is someone I really want or feel I need to please, once it’s sent, I will ruminate over it, re-reading it again and again, as if I could change the content after it’s been sent. I will still ruminate on conversations I have recently had, replaying them and reframing them in my head, thinking about what I should have said, or typed until I “get it right.” I rarely feel that I do.
I constantly tone-policed myself as well, until I received that terminal diagnosis in August 2018 and with it, finally came to the conclusion that I was sick and tired, quite possibly, literally, of trying to please everyone, because regardless of how intensely I try to change my tone, allistics will never perceive my social skills as equal to theirs anyway.
I am keenly aware that I am not able to hear myself as I am heard by others, and I understood this well before I was diagnosed as Autistic this week.
First ironic aside:
The research study I cite all the time, “Neurotypical Peers are Less Willing to Interact with Those with Autism based on Thin Slice Judgments,” literally describes me.
As a fairly intelligent adult who is also a practicing licensed speech-language pathologist, I have personally attended professional social skills training conducted by experts.
I worked diligently to master what I learned.
Yet no one can tell the difference!
This lived experience helped to shape my position that training autistic people to mimic neurotypical social skills to ‘blend’ with the group is both absolute nonsense as well as a particularly sadistic form of cruelty.
Second ironic aside:
After sitting in a year of Zoom meetings, I have come to realize that I maintain a vapid smile on my face the majority of the time when I am not speaking, despite how I might be feeling on the inside. I have done this most of my life.
I worked so hard over the years to lose my “non-friendly” facial gestures, that this fake smile has become a self-protection habit. It’s my mask.
It doesn’t help that I also smile and laugh (fawn) to please and to cover up any negative feelings – anxiety, fright, anger, or pain. And a lot of the times I may appear angry with someone when I am feeling anything but anger. So, people can’t actually judge what I am feeling by the look on my face at a particular moment or by my overall demeanor. Sometimes I don’t even know what I am feeling either until I have reflected on it long after the fact.
Social skills classes don’t cure autism.
And Autistic people don’t need to be cured.
But we do need acceptance.
After I left the corporate world behind to return to the schools, my work environment changed for the better, and my love for facts and rule-following as well as my “heightened sense of justice” (insert eye roll here) now benefit my neurodivergent students as I apply IDEA rules in staffing and meetings to point out when Least Restrictive Environment and Lack of Educational Need are being violated in the pursuit of “cure.”
I am in a privileged position as a school SLP because I have the freedom to write autistic and neurodivergent self-advocacy goals and eliminate ridiculous goals for eye contact, social turn-taking on the partner’s terms, and neurotypical play skills. I empathize with my students.
I work in an environment where I have opportunities to teach staff and parents about important terms they’ve often never heard of like monotropism, alexithymia, interoception, and to teach about autistic styles of social communication, using contemporary research from The Double Empathy Problem, Diversity in Social Intelligence, and Autistic Masking and Camouflage.
The best thing is that I get to teach neurodivergent kids about their neurotype so they don’t have to endure a lifetime of living with chronic anxiety and shame, just because their social skills don’t measure up to some narcissistic “expert’s” unrealistic vision of a perfect form of social communication.
I get to teach neurodivergent kids that they are acceptable and valuable humans, just the way they are.
DSM-V (ICD-10) Diagnoses: 299.00 (F84.0) Autism Spectrum
“Ms. Roberts is a 54-year-old Autistic woman who has engaged in an enormous amount of camouflaging throughout her life. Constantly told she needed to be someone other than who she was in order to be acceptable, she tried to follow the rules and do what was asked of her, only to fail repeatedly. She was being asked to be neurotypical when she wasn’t neurotypical at all. Nevertheless, she persisted, and turned her differences into strengths, achieving great things in her career while overcoming many obstacles thrown in her way by people who did not understand her. She spent so much effort trying to please others and be who she thought she was “supposed” to be, she lost touch to some extent with who she really is. Luckily, she found her “tribe” anyway and began to accept herself. Unpacking all of the old traumas and learning to be true to oneself is a long process, but one that is already well begun.”
Sasson NJ, Faso DJ, Nugent J, Lovell S, Kennedy DP, Grossman RB. Neurotypical Peers are Less Willing to Interact with Those with Autism based on Thin Slice Judgments. Sci Rep. 2017;7:40700. Published 2017 Feb 1. doi:10.1038/srep40700
- Actually Autistic Perspective
- Guest Author – Personal Perspective
- Members Only
- Social Skills Training