CRASH Course in: Neurodiverse Relational and Sexual Health
Written by Kayla Concannon
Illustration by Maartje Aletta Reggin
My name is Kayla, my pronouns are she / her / hers, and I am an occupational therapist in Philadelphia. I have many privileges, and one of them is to spend my days at my dream job where I get to learn from young adults living with intellectual and developmental disabilities. Whether in-person or online, I work with an incredible team at Carousel Connections that supports folks in their homes, on the job, and on the go, to make independence goals a reality. At this role-model organization and at my own, Collaborative Relational and Sexual Health (CRASH) Consulting, LLC, I work with neurodiverse individuals to make and manage healthy relationships of all kinds. My links and contact information is all listed at the end of this article.
It would be completely embarrassing to claim that my training and passion as an occupational therapist comes close to the expertise of someone with lived neurodiverse experience. In literally all instances, please see the source for their opinions. Pay those who are willing to educate you for their emotional labor and don’t expect anyone to disclose their stories or speak on behalf of an entire community, but they are always more knowledgeable than any credentialed observer.
Lived expertise > degrees. #NothingAboutUsWithoutUs
intoOducTion to Occupational Therapy
Occupational therapy practitioners support people across the lifespan to participate in the things they want and need to do through the therapeutic use of everyday activities. Occupational therapy practitioners are educated to assist with everything you spend your time doing on a “regular” day or after a big change. The Occupational Therapy Practice Framework defines our scope into the categories of activities of daily living, instrumental activities of daily living, health management, rest and sleep, education, work, play, leisure, and social participation. We don’t just talk about living our best lives, we actively live them!
By “neurodiverse,” I mean anyone with a worldview that isn’t the perspective of the majority. From my vantage point, being an independent thinker is admirable. To be clinical, neurodiversity can be congenital, acquired / triggered, or progressive over the lifespan. A few diagnoses that might be considered neurodiverse are autism spectrum disorder, learning and communication challenges, brain injuries, dementia, mental illnesses, addiction, and the mental health implications that may tag along with a physical or sensory disability, injury, or illness. That is not an inclusive or definitive list, as it is always up to individuals to label and choose to disclose their own intersectional identities.
“Disabled” is not a derogatory word if preferred by the individual themselves, and phrase preference changes in small trends and across generations. Whether person-first, identity-first, reclaiming a word with some historical sting, or otherwise, our responsibility is to respect preferred labels (or lack of labels) and echo them to stoke the power they hold for that individual.
A noteworthy factor of neurodiversity is that it is invisible. It is impossible to look at anyone and assume how their mind works. Everyone is impacted by their own client factors, things unrelated to any diagnoses, such as gender identity, sexual orientation, personality, interests, learning preferences, communication styles, family system dynamics, living situations, etc.
Learned compliance is a phrase that summarizes the possibly limited decision making skills and self-determination language of folks who grew up around constant authority. When forced to stick to schedules, be voiceless in meetings about your individualized education, transition, and service plans, and avoid the consequences of missing target outcomes in behavior plans, people are reduced to data points. These adolescents can grow up into adults that are trained to be passive players in their own lives.
Learned compliance can leave neurodiverse folks extremely vulnerable to grooming coercion.
A systemic issue that results from the below stigmas and learned compliance (because of looking at small goals rather than big futures) is that many neurodiverse students are excluded from their school’s sexuality education courses. Most of us realize that it’s funded by purity culture and fueled by fear, but you’ll probably be blown away by the statistics on how gaping and misleading sex education is across the United States.
Now, imagine having absolutely no formal education on topics from what to expect during puberty, to consent and pleasure. Natural bodily changes and human instincts become scary, shamed, illegal, and culpable. My universal goal is prevention of entrance into the (flawed) criminal justice system, which is often due to counterfeit deviance. I operate from a minimum of safety, but emphasize how interest in, dynamics of, and ways of measuring success in all types of relationships are unique to every human, no matter what identities you hold.
can they ‘dO iT?’
Short answer: “yes!”
Long answer: “yes, but there are personal, localized, and systemic barriers.”
Stigma is real, and it is everywhere. Neurodiverse folks deal with young separation into the “special ed” classrooms, being stared at for stimming, welcomed when masking but rejected when focused on special interests, judged for receiving government benefits (that are often way too low), and the list goes on.
When we talk about sex, the stigma gets louder. Check out the details of the five stigmas I see most regularly in my YouTube video.
If you are doing this work authentically, your personal beliefs and biases will be tested. If you’re doing this work correctly, your personal beliefs will expand and your biases will be left in the past. This change of heart must not be a superficial show while at work, it should penetrate all aspects of your life and force you to stand up for people who are marginalized or minoritized in any way.
Ever thought about what happens to those kids that are labeled “sensory seeking” or “sensory defensive?” Just like anyone else, childhood highs and lows often find their way into the bedroom (or wherever you ‘do it’). There are limitless options to excite and inhibit the nervous system through sensory play from dull to dungeon.
All entry-level occupational therapy practitioners are qualified to address sexual activity based on The Occupational Therapy Practice Framework, which considers it an activity of daily living. Everyone attempts it with their combination of personal experiences and job training, but I’ve found that talking about sensitive topics requires some extra vocabulary desensitization and finesse.
Our obligation is to empower people of all identities, backgrounds, preferences, abilities, sizes, and consenting ages to make and manage healthy relationships with self and others in a safe, inclusive, accessible, evidence-based, trauma-informed, comprehensive manner, if desired.
That’s a HUGE obligation. I sought extracurricular training to feel more prepared to address such vulnerable and complex topics. I’ve spent countless hours in professional development courses to open my mind and build my international network of sexuality professionals. I was both encouraged to ask questions and humbled to know I’ll never have all the answers. I share what I’ve learned over on YouTube.
I divide my scope and sequence into six types of relationships: self, family systems, friends, community, virtual, and romantic and/or sexual relationships. I fulfill them with a combination of scientific research and evidence, anecdotal and emerging research, existing curricula and creating my own resources based on what my clients want and need. I dive into the details, emphasize the most important relationships, and share my flyers on YouTube.
Access to this information is a right, not a privilege. It is a right for everyone to learn in an understandable way, which is why I stand for free access to these topics on YouTube with visuals, audio, subtitles, linked scripts, and connections to ASL interpreters and non-english speaking translators.
Capacity to consent, guardianship status, and culpability are hot topics. I am my clients’ copilot, meaning that I advocate for their access to safe life experiences once feeling ready (just like any other skillbuilding) regardless of diagnoses and assessment scores.
My obvious responsibility is being available to my participants, but the reality includes destigmatization and education for their loved ones, my coworkers, and the contexts and communities that we occupy. A large portion of my time is spent using my privileges to amplify marginalized voices in all facets of my professional and personal lives.
Best practice is letting go of your ego to become comfortable saying “I don’t know, but I will find an answer for you.” This comes up constantly because relationships' ever-evolving nature can be a source of anxiety.
Keep an open mind to learning from each other. We’ve all had moments where we felt left out, confused, heartbroken, and wishing life came with a rule book. As a relational and sexual health educator, I wish I could hand out copies! I will share ongoing information on my YoutTube channel and social media with what I learn from my participants and emerging research.
Let’s keep up the good work!
let’s cOnnecT (type and tap OpTions)
INSTAGRAM: @otkayla135 or click here
YOUTUBE: CRASH cOnsulTing, LLC or click here
TEXT: send @otkayla135 to 81010 or click here
Please connect with me in a way that is comfortable for you!
Maartje Reggin (@littlemaart) is a disabled designer and activist from The Netherlands who loves doing research and making everyone feel included. She is a friend to all animals (especially her two house bunnies and her cat) and can’t live without tea.
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