In June 2020, I had the option to renew my DL online, as it was. Or go in person to make any changes. At the time, we were still a year away from a COVID vaccine so I chose the physically safer option. But today, the wait was over. I was able to quickly change my gender designation to nonbinary. And update my photograph (my hair color and eyeglasses have changed 5 or 6 times in the last 8 years).
Since my last drivers license renewal, I’ve also been formally diagnosed with Autism and ADHD.
Studies suggest that individuals with gender and sexual identities outside the cis-hetero binary were also three to six times more likely to have a diagnosis of autism.
The Swaddle: The Link Between Neurodivergence and Queerness, Explained
This all serves to help me understand myself and feel more confident in myself. Happy Pride, all!
This is my first April celebrating Autism Awareness / Acceptance month since I was formally diagnosed with autism myself. I believe self-diagnosis is perfectly valid, but I wanted to learn more. Not just for myself, but for my community. Last year I worked with an incredible neurodiversity affirming clinician. She was excited to dive in and learn about my wiring. She helped me understand more about how my neurocomplexity impacts my personal and professional life. In my professional life, in the accessibility space, I continue to encourage others to learn more about neurodivergence. And provide guidance about how to support neurodiversity in the workplace.
Be accepting of autistic (or other) behaviors that might deviate from the norm. Personally, I used to expend SO much energy attempting to mask to fit in while in shared office spaces. Working remotely has allowed me to channel that energy to focus on the work itself. But not everyone is so lucky. To learn more about masking, check out autistic reporter Eric Garcia’s great interview with autistic social psychologist Devon Price, PhD. The timing worked out perfectly. I ordered a copy of Devon’s book, Unmasking Autism: Discovering the New Faces of Neurodiversity, and it arrived just now, on World Autism Day.
I’ve been working in tech for 30+ years at this point. But many autistic people experience high rates of unemployment and underemployment compared to adults with other disabilities and adults in the general population. This needs to change. Sustainable progress will require a real, measurable commitment to neuroinclusion. Which includes working with autistic and other neurodivergent people to foster lasting change.
When bioethicist and professor Ashley Shew became a self-described “hard-of-hearing chemobrained amputee with Crohn’s disease and tinnitus,” there was no returning to “normal.” Suddenly well-meaning people called her an “inspiration” while grocery shopping or viewed her as a needy recipient of technological wizardry. Most disabled people don’t want what the abled assume they want—nor are they generally asked. Almost everyone will experience disability at some point in their lives, yet the abled persistently frame disability as an individual’s problem rather than a social one.
Skipping back to October, a couple of significant things occurred. After years of wondering, I was formally diagnosed with autism and ADHD. On the same day I had my final session with my fantastic clinician, a book I pre-ordered arrived. And, in the most ADHD move ever, another copy of the same book showed up the next day. Apparently, I’d pre-ordered it two days in a row without realizing it. That book was Unmasked: The Ultimate Guide to ADHD, Autism and Neurodivergence by Ellie Middleton. Thankfully, I was able to give the second copy to a friend who has been pondering her own neurodivergence.
“Learning the way my brain works has changed everything for me,” she says, and describes herself as almost being a poster girl for what can happen when you get the answers you need.
National Disability Employment Awareness Month just ended, but it’s on my mind all year long. I’m making this post in the hope that it will help someone else. Or help some folks better understand me and my non-apparent disabilities.
Misophonia
The most recent episode of The Allusionist podcast hits home for me. It tackles two topics I identify with: misophonia and alexithymia. I’ve always been more sensitive to sensory input (sounds, scents, visuals – especially flashing lights and shaky cam). Over a decade ago I made the connection with misophonia for my auditory issues. All the pieces are falling into place now that I’ve finally been diagnosed with both autism and ADHD. If I ever snapped at you or seemed preoccupied during a meal, or when you were maybe drumming on the back of the car seat I was sitting in (hello my musician friends), this is why.
being over-responsive to sensory information, more tuned into sensory information, and more likely to apply meaning or context to sensory information, and that is really a very common feature in both autism and ADHD and therefore it predisposes that person to develop misophonia
I’ve particularly struggled with the sounds of other people eating. I lived with one partner who clanged cutlery against his teeth and it absolutely enraged me, which made me feel awful. Then I worked for a company that had a cafeteria and expected employees to sit together to eat lunch. The acoustics and lighting in the space were so overwhelming it nearly brought me to tears. I opted to take a daily lunch walk instead and quickly eat at my desk afterward. I’ve developed these coping methods over the years. Avoidance or noise canceling headphones are my main tools.
Alexithymia
Alexithymia is the thing I don’t have a handle on yet. I remember being frustrated when a therapist would ask me to describe my feelings or where in my body I felt them. I have no idea. But now I know *why* I have no idea.
“Alexithymia is a neuropsychological phenomenon characterized by significant challenges in recognizing, expressing, and describing one’s own emotions. It is associated with difficulties in attachment and interpersonal relations. While there is no scientific consensus on its classification as a personality trait, medical symptom, or mental disorder, alexithymia is highly prevalent among individuals with autism spectrum disorder (ASD), ranging from 50% to 85% of prevalence.”
The Book
This book contains everything I wish I’d known when I was a teenager, hiding a giant whirring walkman in the pocket of my school uniform so that I could block out the sounds of my classmates clicking through all the colours in their four-pens. It’s not just coping strategies (although there are plenty of those), it’s also full of ideas to help your brain make new associations with sounds, which brings down the intensity of your reactions. I cover some of the exciting research that’s happening in the world of misophonia, connect you with your inner miso child, help you deal with big emotions and embrace the meerkat within. Adeel Ahmad shares stories from our volunteers who worked through the book while it was being written. There are several out-of-date pop culture references, and you’ll be happy to hear that my editors and early readers very firmly encouraged me to remove the rest of them.
Somehow it’s already November. But every October, it is National Disability Employment Awareness Month (NDEAM). This celebrates the contributions of America’s workers with disabilities. And showcases supportive, inclusive employment policies and practices that benefit employers and employees. The Office of Disability Employment Policy (ODEP) chose “Advancing Access and Equity” as the theme for NDEAM 2023.
I shared these resources within my company at our monthly Accessibility Community of Practice meeting:
I also shared the good news that civil rights litigator Karla Gilbride was sworn at the U.S. Equal Employment Opportunity Commission. The role was vacant as she waited a year and a half to be confirmed. She will lead the EEOC’s critical litigation efforts on behalf of workers accusing their employers of discrimination based on race, sex, age, disability, and other characters. Gilbride is blind and the first person with a known disability in the role of general counsel at the EEOC. This is in line with our “Nothing About Us Without Us” motto and I’m glad of it.
Writer, disability-justice activist and performance artist Leah Lakshmi Piepzna-Samarasinha knows that it’s possible for society to become more equitable. They envision a future in which “people are free to be, regardless of their ability to fit into capitalist institutions.”
I’m excited by the work of activists like Leah Lakshmi Piepzna-Samarasinha. And their latest book that “lays out a bare-bones agenda for what is needed to make the U.S. more socially just: affordable, available and accessible housing; healthcare and pharmacare; a universal basic income for all residents; free, high-quality public education programs; and the elimination of punitive policing and incarceration.” A resounding YES PLEASE to all of it!
Unfortunately, the systems in place are resistant to change. Instead, those in power propose much smaller, incremental tweaks. For example, recently the State Department announced the finalization of their Five-year Diversity, Equity, Inclusion, and Accessibility (DEIA) Strategic Plan. Don’t get me wrong, this more intersectional approach is a step in the right direction. But it will only protect federal employees. Only 20% of people with disabilities are employed, compared to 64% of non-disabled people, according to the U.S. Bureau of Labor Statistics. That’s a huge gap. Only 4% of DEI initiatives include disability and that’s just in organizations that even have a DEI initiative. Most companies don’t have their disabled employees or customers in mind. A perfect example came from the amazing Meryl Evans. Yesterday she posted about her experience with an Apple Watch, and more.
“People with disabilities can bring a lot more to your team than what you see on their resumes.
They have an uncanny ability to come up with innovative ideas and solutions. Feeling excluded has a way of driving people with disabilities.
For instance, I never wanted an Apple Watch. I hadn’t worn a watch in years. A friend convinced me to try it. It made my life as a deaf person easier!
How? It became an accessibility tool.
It buzzes when cooked food is ready. No more overcooked food! It buzzes when someone is at the door. No more packages sitting on the porch for stealing. No more leaving my sister stranded on my doorstep when she dropped by unexpectedly.
No one advertises these benefits. Apple never marketed it that way. If they had, they may have gotten more buyers and fans.
These are examples of how someone who is different from you can innovate and come up with creative solutions.
We don’t always click when we meet someone. This isn’t because of a bad interview. We tend to click with those most like us. You’ll gain more when hiring someone different from you.
The thought of creating a more accessible hiring process feels overwhelming. Just start. How can you get started?
– Ask every candidate what accessibility they require. – Verify the online application process is accessible for keyboard-only navigation and works with screen readers.
These are starting points. Keep working on it and adding more pieces. Progress over perfection. Just start.”
Again, yes to all of these things! I’m neurodivergent and have an auditory processing disorder. I wear noise-canceling headphones a good portion of the day. The Apple Watch’s haptic feedback has made my life so much easier too. And I want that for others. There’s so much we could do, as a society, to improve the quality of life for our fellow humans. But the pace of change is moving too slowly. More people are being forced to survive with less…while profit margins are on the rise for those at the top. We could all be thriving instead.
Whenever something horrific happens we hear politicians opposing gun laws spew lines that lobbyists wrote for them:
“Guns don’t kill people, people kill people.” “We don’t have a gun problem we have a mental health problem”
When people who oppose gun control use statements that blame mental illness rather than our gun violence epidemic for horrific murders two things happen:
Mental health, or any neurodivergency, is further stigmatized and politicians push blame off of themselves and onto people who’s brain works differently than theirs.
Ableism works alongside other forms of systemic bias or oppression because it is a part of what co-creates the idea of an “ideal” expectation of body and mind: a non-disabled body and mind. These forms of systemic oppression combine with an implicit bias to label any body or mind form that is “other”than that “ideal” as “less than.” Politicians push the blame off of themselves and ONTO individuals who have mental illness. This increases the fear and stigma that people with mental illness deal with AND gets people to stop talking about gun control and start talking about mental illness instead.
So next time you hear someone saying we don’t have a gun problem, that this is a mental health issue: tell them two things.
1. Reality check: the USA isn’t the only country in the world where people are mentally ill. We ARE the only country that has 12 children die from gun violence and another 32 shot and injured EVERY DAY. Plus, studies show that mental illness contributes to only 4% of all violence, and the amount to gun violence is even smaller.
April was Autism Acceptance month, but neurodivergent people need to be accepted all year round. So I was happy to read about a newly launched job site. It was created to help neurodivergent folks find meaningful work without barriers. The job search and job interviews, in particular, can be difficult. Neurodivergent applicants often feel overwhelmed and misunderstood. But this site aims to connect employers interested in more inclusive hiring with neurodiverse candidates seeking employment.
…the Neurodiversity Career Connector features job listings by U.S. employers seeking applicants with autism spectrum disorder, attention deficit hyperactivity disorder (ADHD), dyslexia and other conditions associated with neurodivergent, or atypical, brain functioning.
If neurodivergent candidates can make it through the door, they have so much to offer employers! From Dr. Nancy Doyle’s site:
Neurodiversity can be a competitive advantage when the individuals are in the right environment, making use of their strengths, instead of constantly trying to overcome challenges. To achieve this we must create inclusive spaces to work and learn that reduce disabling factors and amplify diverse abilities.
