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AutismBC Connects

Late Not Less: Stigma and Ableism Keeps Support Out of Reach

April 4th, 2023

AutismBC

For Everyone

Kristina Kearley is a late-diagnosed autistic person from New Westminster, BC. They work as a film technician in IATSE 891 and serve as a trustee on their union’s Health and Benefits Trust. They shared their journey from their autistic awakening to professional diagnosis.

 

TW: Suicidal ideation

Realization and Internalized Ableism

[I realized I am autistic] because of a workplace injury in 2018: I was in an occupational therapy day program that included care from a neuropsychologist. During the intake interview, I was trying to find language for how the concussion impacted the routines that were critical to my executive functioning for work, social activities, and general life things. They asked me some questions about my childhood and family background. Through her questioning, I recalled that I had several cousins diagnosed at various support levels for autism and adhd, and my brother was early identified with strong presentation of ADHD, and my father suspected his own diagnosis with autism or ADHD. The doctor noted that there were some additional indicators from before the concussion that I could be neurodiverse, which could influence what I needed to effectively rehabilitate to my pre-accident baselines and how I understand and advocate for my needs. She recommended further exploring my childhood memories of sensory experiences in therapy as a means of finding more self-knowledge and potential support in the broader neurodivergent community. [She also suggested] it may be possible that diagnosis could help inform my ongoing care.

To be honest, it was hard to hear at first. There’s no better way to say this, but I had a lot of internalized ableism and identity built around “giftedness.” When I later learned more about asymmetrical development, I got a much better understanding of how “being good at _____” helped insulate me from stigma regarding the things I struggled with, with no supports and sometimes outright hostility from care and education providers. It took a few years from that initial appointment with the neuropsychologist to “unpack” my history and to feel ready to approach the diagnosis process. Understanding myself as autistic explained so many of my experiences. Even so, I felt like I needed time and effort to address the impact of sensory and early childhood trauma in my life before I could be certain that neurodivergence was a constant variable in my life. A lot of us, as I came to learn from moderating peer-to-peer support groups, struggle with the intersection of complex-post-traumatic stress disorder and neurodivergence. For me, I needed to bring myself into a more regulated state to effectively integrate my lived experiences before I could feel confident in the probability that I had autism.

 

Kristina is a film technician and an elected health and benefits trustee.

 

Childhood, in Hindsight

After all that work in therapy, it became a lot easier to remember myself objectively as a child and to remember how expressions of autism were dealt with by family, education, and healthcare providers.

I remember speaking in full sentences quite early, reading exceptionally early, and far above level. I expressed echolalia, and walked on my tip-toes, but struggled with coordination and things like riding a bicycle, years behind my peers. I remember my first experiences of sight/taste/scent synesthesia as a very small child, how hard it was to find words to describe those occurrences, and how often I was punished for expressing or communicating about these things in unapproved ways.

I remember being praised a lot for socially acceptable and valuable things like my literacy or types of verbal communication and: How much effort was put into repressing expressions of hypermobility or stim-seeking. I learned to accept being very physically uncomfortable and to hide myself when overstimulated, at a very young age. I had very strong preferences for textiles in clothing and extreme hypersensitivity around hair. Out of necessity, I became very good at managing information to guide adults away from negative outcomes in social interactions. When I hear other autists say that allistics accuse them of manipulation or being less than truthful, I try to ask them what was done or happening around them to make the truth unsafe to be spoken.

I remember accompanying my younger brother and both parents to specialist care for him shortly after his diagnosis. I think I was 7 or 8 at the time. I stayed in the play-area in the reception area, as far as I remember, unobserved. The low lights and art on the walls immediately relaxed me. Usually when I was in public around adults with my parents close by, I would sit in an acceptable pose I practiced: legs crossed, hands on knees, smiling. I remember waiting for my parents to go into the room with my brother and I went straight to the K’Nex and started building. I remember a care provider coming out to the lobby with both my parents and asking if they would consider having me assessed. My mother took great offence to this and listed the traits that noted me beyond regular development and implied the doctor was motivated by money. She took my brother and I and my father from the office very quickly. I was never brought back to the office but, spent a lot of time using a set of coloured light and music stim goggles that my parents bought for my brother. So much so that there were sharing rules established for them.

In hindsight, as a nurse and as a 1st generation Canadian, my mother was very scared of pathologization and how it would impact my diagnosed brother’s life. She had a lot of internalized ableism. My father, who was very skilled in a very specialized niche career, felt like he got to his position of economic security because his parents invested in supporting his “gifts & strengths.” I can say now, as an adult, that they both wanted the best for me and their individual fears and biases were what compelled them to keep diagnosis and support resources out of reach for me. It wasn’t until my dad was in his late 50s that we could speak openly about ADHD, autism, and parenting my brother and I. Those conversations were hard work for both of us, but they rebuilt our relationship and I am really grateful I got that time with him before he passed away in 2020.

 

Growing Up, Undiagnosed

A big part of why I want to participate in this project with AutismBC is that I feel like I lost a lot of time and a lot of potential supports due to being missed. Folks from older generations didn’t have the language or knowledge that could show them what effective supports could be after diagnosis. For anyone at any age. I have seen so many stories from other adults, especially women, who tie questions of value and worth of a diagnosis as an adult to an underlying questioning of their own value. It is important to me to be able to show that you can come from a place where you don’t have a lot of resources and are questioning if you are worth the effort, and find value and self-knowledge by investing in diagnosis. I really see it as a tool and worth trying to knock down barriers to access it.

I think that most people, most of the time, want what is best for their kids. Sometimes, they can be limited by their immediate perspective and sometimes, sadly, their own needs. I got left behind because one parent needed a “good kid” to balance out her internalized issues with the support needs of my brother and my neurodivergent parent felt powerless and blamed themselves for the challenges my brother and I faced.

 

Kristina’s brother received an autism diagnosis at a young age.

 

That’s an ugly thing to talk about but, we need to be willing to have difficult conversations about why we miss low-support requiring autists and the intersectional complexities of culture and gender in assessment practices.

It’s also important to talk about misdiagnosis. My social, sensory, and hypermobility struggles became unavoidable as a young teen. In middle school, educators stopped caring about how advanced my reading level was, or when I started to speak as a baby. But they did start to care when I sharpied in the Baja Peninsula to an outdated & incorrect Map of North America while questioning the university education of the geography teacher, started skipping school, and other “antisocial” expressions of Persistent Demand Avoidance. The second I became “the difficult kid,” I was put in front of pre-selected psychiatrists and care providers. But, as a minor in a foreign country, I also had to navigate how I could inform my care team about my needs and experiences, as my family’s green cards and father’s job and security clearance could be at risk if I was honest about how masking was enforced in the home I grew up in.

It was easier for my parents to accept struggling with treating a daughter with “extreme suicidal ideation, possibly a personality disorder” than it was safe for me to access honest care and support. By centring me as a problem to be fixed and managed, they did not have to begin to deal with their own internalized ableism or how their approaches to parenting we ineffective at finding the outcomes they desired. Those choices to make our struggles our fault, a symptom of choice, impacted me and my brother well into adulthood. I wish parents had better supports, too. I wish that healthcare and educators had more training on how to spot “hard-to-spot” youth and how to support their care and learning. I wish there were better protocols for young autists in hostile home situations to make decisions about their own care. I wish that there were better options than trying to survive in place or the dangers of group homes and fostercare. There were so many lost opportunities from educators or healthcare professionals to help me. I felt ignored and devalued deliberately for a very long time. That feeling informed a lot of the choices I made as a young person. I feel pretty lucky to be alive.

The Isolation of an Undiagnosed Adulthood

Being autistic without knowing you are autistic is incredibly isolating. Things that seem absurdly simple for other adults require impossible amounts of work and time to secure and maintain. If you have any self-awareness, you know the difference is because YOU are different, but you also do not know why, or how to deal with those differences. Over time, isolation and failure seem to compound like interest. This can be absolutely maddening if you have high levels of core competencies in certain areas: You want it to balance out, but there are so many situations where… it just doesn’t.

For most of my 20s, I really struggled to find a fit in a workplace. I tried so many professions before I found myself in love with filmmaking. The community of working hard with other creatives dedicated to the technical aspects of storycraft hit so many of the right checklist boxes: constant mobility, shared passion and goals, the misfit acceptance of other “outsiders,” working with my hands on many different types of mechanical and abstract projects and getting to see the products of my work move people and give them joy. Film work integrated all the things I was good at and challenged me to invest in working with other diverse folks to common goals. It challenged my comfort levels and is deeply satisfying work. Hyperfocus is a virtue on a film set, having lots of weird and diverse skills is an asset. On a team where your tools move from site to site and multiple locations across those sites, being able to effectively keep things organized and adapted makes you valuable.

 

“I feel like I lost a lot of time and a lot of potential supports due to being missed.”

 

People have always been challenging for me. If I navigate most relationships superficially, I can avoid a lot of difficulty, so I have very few actual friends. A lot of people, including myself up until very recently, see that as a deficiency. I’ve come to understand that my life is simpler and more peaceful when I fight less to be understood. Because I’ve had so many difficult experiences with people and am hyper-conscious of me being “difficult” I’ve avoided connection or attempting to be authentic with most people. Being misunderstood hurts. Being misdirected hurts. It’s easier for me love people when I am working on a broad cause for a humanitarian effort. Up close, I have to fight the desire to not want anything to do with most people.

I edited myself out of participating in most of high school but still graduated with letters in Drama, Language, and Science. I came to class only for testing and skipped every day. I was polite to the truancy officer, and took my Saturday school detentions as a necessary cost to avoid being trapped at a desk surrounded by difficult and superficial situations. I spent most of that time out of class driving to a nearby college town and auditing courses on fine art, anthropology, psychology, and biology. All skills that built out my knowledge of the subjects I lettered in because I tested well in them.  By the time high school was mid-way and most of my peers were putting in college applications, it felt like my parents gave up on me. As long as I was on track to graduate, I was left to my own devices. That was a suitable compromise and I moved out three months before graduating and, a year later, moved back to Canada permanently.

To this day, most of my hobbies are hobbies I do alone: Hiking, swimming, painting, drawing, reading.

Because I didn’t know how to effectively self-regulate until fairly recently, I also edited myself out of a lot of normal, age-appropriate life experiences and milestones. It was easier to remove myself from people, places, and things that were challenging because I didn’t feel like I had the language to honestly name them, the skills to deal with them, or the power to navigate the consequences of failure or success.

So much of my identity was centred around being an outsider; I didn’t make time or effort to explore better ways to be close to people. Examining autism’s role in my isolation objectively has helped me slowly begin to reframe what closeness and relationships can be. It’s been hard to be able to find my voice when something is harmful or confusing. It can be hard to tell when people are genuinely interested in getting to know me, being polite, or political in their interest. I’m fortunate in that my partner, core friends, and some colleagues are deeply patient and encouraging of me.

What’s changed with the knowledge I’m autistic?

I’m better at taking care of myself. I feel less guilt and embarrassment for prioritizing myself and sensory regulation. I’ve been able to effectively examine and let go of a lot of hardship. That may seem weird because I have shared a lot of really personal things here. After what I have seen in online communities, from so many other people exploring their autistic identities, I’ve come to learn that so many of my own experiences are quite common. I want to make those parts of my life matter by using them to help people feel less alone and more worth the effort of investing in themselves.

 

“I want to…help people feel less alone and more worth the effort of investing in themselves.”

 

I’ve always had a strong sense of what was fair and not. More recently I find myself trying to help people stuck in difficult circumstances. That empathy from my own experiences makes me a more effective shop steward and a good trustee. When I did the work to integrate my past and understand how autism has influenced by life there was a surprising shift for me: I was able to start seeing humanity and individuals in good faith again. Even good people make bad decisions when their options are limited and they are stuck. Simultaneously, I have been able to better protect myself from being hurt by being more aware of patterns in how people make their choices.

The Assessment Process

Getting assessed was 4 sessions, over the course of a month, several thousands of dollars of cost. I was nervous about the process. There are a lot of other autists that have to see multiple doctors because the DSM standards for diagnosis are poorly adapted to high-masking individuals, women, and many other types of folks. I was worried about ending up with another stigmatized diagnosis on healthcare records. The last time I had seen a psychiatrist for help was as a teen. I felt like I had enough trauma for one lifetime, and after reading other people’s diagnosis stories, I didn’t want to put myself in a position to be harmed, made invisible, minimized or devalued by an outcome that missed my lived experiences. I was lucky in that my assessor was also neurodivergent and specialized in hard-to-spot people. I think that taking my time to select my assessor helped me overcome those fears.

Internalized stigma on accessing diagnosis was the biggest initial hurdle. The second was finances. I spent most of my 20s struggling below the poverty line and not really able to understand why holding down regular, non-seasonal work was so challenging for me. I attributed sensory dysregulation to trauma responses and didn’t know they sometimes need separate approaches and tools to support. Once I got a good union job with benefits, the mental healthcare I was accessing was more focused on trauma. The autism indicators were just invisible to most therapists: Sensory dysregulation presents very similarly to PTSD and prolonged, unsupported sensory dysregulation can also cause PTSD.

The third barrier was the double bind that happens when someone gets healthcare that does more harm than good, or has a history of not being able to effectively access the care they need. Before diagnosis, when I tried to explain sensory aspects of my experiences, many counsellors and healthcare providers were dismissive. Registered Clinical Counselors are the most accessible and inexpensive mental healthcare support, outside of government-assigned social workers. More RCCs should have mandatory continuing education on neurodivergence and trauma-informed support in order to be licensed. As a younger adult, I feel like I could have been spotted sooner if there wasn’t such a long wait list for psychologists and there was less risk of being treated poorly when approaching healthcare. RCCs are not uniformly trained or equipped to treat autists or folks with trauma and much more rarely: when both present in one person. Having better mental healthcare adequately & accessibly covered on a student health plan could have changed so much of my life, a lot sooner.

 

“I was lucky in that my assessor was also neurodivergent and specialized in hard-to-spot people.”

 

I once had a roommate going to Adler to become a therapeutic clinician. She told me one day that she only wanted to help people with simple, small problems. I spent most of the rest of the evening laying in bed staring at the ceiling wondering how many therapists had cut me loose after a few sessions of prodding out the most difficult and painful parts of my life, because they preferred lite-duty clients. I thought about all the therapists I encountered who had greater dysregulation and professionalism challenges than I did, who I just ghosted because they seemed completely unequipped to handle life, let alone providing mental healthcare to others. Over time, consistent failure to find effective therapy can also add to the belief that you are an un-mendable, broken person. Or that it’s pointless to keep trying to understand yourself. The very process of trying to find mental healthcare that is suitable is exhausting.

The financial and time costs of assessment were a decent-sized barrier. Despite earning quite well as a technician, the assessment process was very involved and hard to plan around my work schedule. I had to be disciplined outside of my regular financial practices to save the money required to start the assessment process. The cost was so significant that I also worried about throwing away several thousand dollars on a potentially harmful experience without a guaranteed outcome. If diagnosis and mental healthcare was adequately covered by the province or federal government, I would absolutely have started the process a lot sooner.

It’s always seemed strange to me that in order to get financial stability, folks with complex backgrounds need good healthcare and that in order to get good healthcare, you also need to have financial stability well beyond the poverty line up to the top of what we consider the middle class. Poverty and lack of access to healthcare tools like diagnosis completely cuts so many people out of their potential to economically participate. Once people are unable to participate in community or the economy, our culture further begins to devalue them. 

Even after deciding to get assessed, I stalled out around decisions relating to my family’s involvement. For me, it wasn’t safe to involve my mother in a process she was so active in delaying or disrupting for most of my life. Even healthy Family relationships can be difficult to navigate for many people but, most assessors assume or require full participation from family or close friends in the assessment process. I was fortunate in that the assessor I eventually selected to work with was understanding of my circumstances and worked within the frame of my existing core relationships.

What’s changed post-diagnosis?

The confirmation from the diagnosis has demystified a lot of my past and helped me make peace with how difficult certain experiences have been. I’ve been able to free myself from a lot of negative self-talk and false narratives that frame my value around aspects of my development or economic participation. I’ve made room in my life for advocacy and volunteer work in line with my values. I feel more integrated and authentic. I work because I love doing my work, not because I feel like if I stop working, people will forget me and what I’ve worked hard for will disappear.

It’s helped me give myself permission to learn how to self-regulate as an autist, which has helped me put the mid-twenties diagnosis of C-PTSD into remission. In connecting with the broader online community of autists, I’ve been able to find and use more tools to support my executive functioning. It’s enhanced my sense of peace and identity. I can look back on my life experiences with self acceptance, which has helped me move on and have healthier and productive relationships with folks.

Deadlines and creative projects are easier to manage now than ever before. I have more tools that work for me: reverse pomodoro’ing workload and task management, and I am better at pacing workflow.

This is kind of funny to talk about but, it also changed how I date. My current partner is neurodivergent and diagnosed with ADHD. I seem to have given up on trying to crush myself into conforming to allistic relationship norms. I’m better at communicating my needs and feelings. I can hold boundaries with friends and relatives with greater compassion for them and myself. Being more attuned to what I need to self-regulate and not feeling guilty or ashamed about self-regulating has made my relationships more peaceful and stable. I’m better at letting go of people and situations that are harmful to me and understanding when it is ok to and worthwhile to stay and work on things.

 

“I feel more integrated and authentic.”

 

I’ve also had a bit of a hard time trying to figure out how to manage masking and autistic identity. I thought I had a lot more safety as a creative in a union environment but, I’ve come to find that autism and autistic identity are not always seen as genuine or valued by individuals regardless of what a workplace culture is supposed to be. I’ve had some challenging and painful experiences recently with people and organizations that I thought I knew and understood, and that also valued me. While those experiences inspired me to run for a spot on my union’s health and benefits trust, I’ve done a lot of grieving for the changes in those relationships. 

There have been times where I wanted to shout “I was still autistic when I was doing the same job last year! The only thing that’s changed is you showing how you are different.” Diagnosis also made me really rethink my own behaviour too. You cannot advocate for yourself, or anyone else, with any integrity if you mirror toxic behaviour that may be normalized in a workplace, even if you think it’s for your own safety. HR exists to protect the liabilities of the company, not the worker. Unions are deeply limited in their advocacy by the power of their collective agreement and how management executes “the right to manage.” People who do not like you or feel threatened by you can weaponize allistic relationships, institutions and systems to remove, isolate, or harm you. People can do that for entertainment, or personal gain.  It’s given me a lot to think about, more reasons to be selective about who I work for and when it’s best to leave a space.

Shortly after my diagnosis, I prioritized advocacy and authenticity over my safety and well-being. Going forward, I want to create a better balance there.

I used to have very negative ideas about the word “solidarity” that, it meant thoughtlessly moving in lockstep for leadership that may not have anyone’s best interests but their own. The more time I spend talking to other autists, self-educating, and participating in social, ecological, and governance movements for change, the more I see that solidarity really means that we need to work together to get everyone ahead.

Now that I know myself as an autist, my values have been refined and my focus on how I can contribute to building a better world is honed.

Encouragement for my past self

I kind of want to be able to get her back so much of that wasted time I spent struggling and isolated, even though that seems impossible without changing conditions of the world at the time. I wish I would have been able to access better trained mental healthcare, earlier in life. I would have tried to prioritize Dx and better mental healthcare for myself as a lower income earning adult but also, to be more compassionate with myself because mental healthcare is so expensive and when you are struggling to pay rent and eat, it feels like an impossible privilege. I would try to tell myself that I was worth that privilege.

I would want my younger self to know that they did a really great job of surviving and that its ok to be bad at some things: That what they can and cannot do doesn’t change the value of them as human being. One of my newest favorite expressions is “The perfect is the enemy of the Good.” Sometimes a less than great job is a launch pad for a better job, or a little short term financial boost to try a new therapy or self regulation tool.

 

“my values have been refined and my focus on how I can contribute to building a better world is honed.”

 

I would try to convince them to give up waiting on other people to change or become the ideal version of themselves. That it is ok to grieve for a living person who was never able to be a good caregiver but that it is also important for you to be the expert on how to take care of yourself. I’d want my younger self  to know they are worthy of better care and it is possible.

Maybe also: Don’t get loyalty trapped by employers, partners, or friends or associates who demonstrate that loyalty isn’t mutual. Put your safety and well being first. The most important part of a safety plan for when you want to remove yourself from a relationship: (personal or professional) is having a plan for what comes next. A huge component of freedom is financial power. When you have economic power, you can make better decisions and build better supports for yourself.

What More People Should Know About Autistic Adults

That shared humanity is universal. People don’t exist on tiers of worthiness. We are the same people that we were before diagnosis as we are afterwards. Traits that the medical community has historically pathologized as needing correction can end up blooming into remarkable talents for organization, systems-based analytical thinking, fantastic expressions of art, and advances in STEM.

We as a species deeply need people who think differently to take their rightful places in leadership roles. Autists think differently. That means it makes some significant things much harder for us but also positions many of us well to be exactly those “different thinkers” that can help you, a workplace, or an organization adapt to change. We spend our whole lives designing adaptations for living in a world that was not designed for us to find success in. I’d argue that we are so good at living and thinking differently that many of us may be incredibly well suited to helping “stuck” institutions implement systemic change.

 

“Shared humanity is universal. People don’t exist on tiers of worthiness.”

 

It may seem mismatched that the person who loses their keys or cell phone 8 times a day can completely restructure your inventory in ways that improve lead times, but sometimes when you are an expert at the big picture, it’s hard to deal with small picture things. Sometimes when you can crush an 80 hour week to deliver the most exquisitely perfect 3D rendering of hair blowing in the wind, you just can’t compel your body to be present for another daily Zoom meeting on productivity, or begin each day in that work week at the same time of the day. Let us help you by you letting us be good at what we are good at. Sometimes that “letting” means being open to being flexible about how we work alongside you. Sometimes “letting” means being willing to talk about supports and concessions to how we manage our own workflow. There are many types of allistic people who also access the best versions of themselves when they are in work cultures like this. People are different and need different things.

There’s no single way to be autistic: That was the actual point of the concept behind the term Autism Spectrum. Expect every autistic to be capable of complexity, variable intensity and deep emotional range that just won’t always align to your needs and expectations for performed consistency. Understand that those are all just aspects of being human that we share with you but express in different ways.

Part of that is also that we also deserve normalcy and average-ness. The false dichotomy with no middle ground between the highest support needs and the highest levels of achievement is painfully limiting for so many of us, regardless of where we land on the spectrum. I love the working class everyday-ness of the life I have carved out for myself. Despite the unnecessary barriers, my life now presents as pretty average. It’s taken me a long time to see how valuable and worthwhile “average” is.  I enjoy the work I put into my communities, my vocation and the loving relationships that I’ve built around myself. Everyone should have access to whatever makes getting all that easier.

Less stigma and better access to mental healthcare and diagnosis isn’t just a benefit to us as autists: Allistic folks need better mental healthcare, too! More autists participating in the community and economy enriches us all.

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