When you witness an autistic person spending six hours a day playing a video game, or on their tablet or smartphone, or compulsively watching the same movie or TV show or being absorbed in books about their favourite topic, a person may worry about it being an addiction, rather than a pastime. This may be especially worrisome when an autistic person doing their favourite thing cuts into time that is supposed to be used for homework, or cleaning the house, or other healthy activities like playing outdoors with friends. When a person obsessively does the same thing for hours, isn’t that an addiction?
Keep in mind that our special interests are our medicine. It medicates the pain of living in a world that is hostile to autistic people. Many of us may escape into our own special interests because it soothes that pain. An escape into our interests is relaxing after a long day of being bullied by our classmates at school, snapped at by teachers who see us daydreaming in class, operating under fluorescent lights, taking phone calls at work, and being forced into social interactions with others. It can restore balance to our lives and help us make peace with our bodies and the world around us. An overindulgence in our medicine, escaping into our special interest too often or for too long, may just be us needing extra peace right now. It may even be a cry for help, as there is something significantly bothering us that we do not see a resolution for.
Dr. Gabor Maté, in chapter ten of “In The Realm Of Hungry Ghosts: Close Encounters with Addiction, offers helpful advice in determining what is a life-fulfilling passion, and what is an addiction. He writes, “If you want to know, look around you. Are you closer to the people you love after your passion has been fulfilled? Or more isolated? Have you come more truly into who you are? Or are you left feeling hollow? The difference between passion and addiction is the difference between a divine spark and a flame that incinerates”.
Our special interests are that divine spark, under this definition. Our special interests help us come more truly into who we are, by feeding passion and light into our lives. I also believe that our special interests can, in many cases, be conduits for connection. An autistic person who shares their interest with another person is a baring of their soul. It is a sharing of their light and their warmth with you. The autistic person has found something which pours joy and happiness and purpose into their lives, in the hopes that it will also bring you joy as well.
For Autistic Pride Day this year, held on June 18th, I decided to livestream myself reading Loud Hands: Autistic People Speaking, editted by Julia Bascom, from front to back. Or at least as much as I could before my voice gave out. I shared the livestream with my local community pages on Facebook, as well as Facebook groups for autistic individuals and families. I managed to read out loud for one hour and forty minutes before my voice expired. We read Jim Sinclair’s “Don’t Mourn For Us”, and “Autism Network International: The Development of a Community and its Culture”, both being foundational documents of the autistic rights movement. When I checked the video later, I saw that the video had over 150 “engagements”; clicks. There was no way to tell how long anybody stayed on the video, but over 150 people had listened for /some/ amount of time. They might have left my stream on a tab on their computer while they were doing some other work, or listened for a few minutes, or just a few seconds. Whatever the truth, over 150 people had listened to at least a snippet of the foundations of autistic pride and autistic rights.
When somebody asks me what they should read to learn more about autistic pride, they get a waterfall. Read Loud Hands: Autistic People Speaking to learn the foundations of our movement! Read All The Weight Of Our Dreams to hear the perspectives of autistic people of colour and the intersections of disability justice and racial justice! Then read Typed Words Loud Voices to hear from non-speaking autistic people! Neurotribes to learn the history of autism from the 1920s to the 2000s! Aspergirls for autistic women!
The person may have come to me feeling curious and now feeling overwhelmed. Even asking someone to read one of these books is a ten hour commitment. They will come out of that ten hour commitment much more informed and with fresh, inspired perspectives, but often the people who are asking me this question are parents with very little free time, or fellow neurodivergent people who have little energy.
But after that day livestreaming the reading of Loud Hands: Autistic People Speaking, I had a realization. The real difference won’t be made by a few people reading the whole of Neurotribes or Aspergirls. The difference will be made by multitudes of people reading just a chapter or a few lines from it.
So Neurodiversity Storytime became a weekly event. Every saturday at 3 PM PST, I jump on my advocacy page, Neurodiversity YMM, and I livestream myself reading literature written by neurodivergent people about our experiences, our pride, our needs, our passions, and about disability justice, with permission from the author. This way, there is no commitment involved; instead of telling people what they need to read, I am walking this journey with the listener. And people only need to engage as much as they want to or are able to. You’re invited!
This speech was given outside of the Alberta legislature on August 27th, 2020, at the #HoldMyHandAB rally for a reversal of the provincial government’s education cutbacks which caused the defunding of close to 20,000 jobs lost in the education sector across Alberta and increased class crowding. One of the most divested staff positions were education assistants who help diverse learners keep up with their classmates. The cutbacks have perpetuated a hostile environment for neurodivergent students and placed barriers to their success in school. “Keep Believing in the Unlimited Potential of Neurodivergent People” frames a position where unequal access to education is a continuation of eugenics programs against certain populations that the government of Alberta has enacted for over a century, and makes the case for education being a key to health, well-being, less demand on the welfare system, and a crime-free society.
Hello everyone, my name is Christopher Whelan, I am a proudly autistic man and a social worker in my hometown of Fort McMurray, far north of here.
I will also introduce this flag that I carry with me; the Rainbow Infinity. It is an internationally recognized symbol of the pride and community that we feel as neurodivergent people; people with minds that work differently than most. The rainbow, as you might have guessed, is adopted from the design of the rainbow LGBTQ+ pride flag designed by Gilbert Baker in 1978. It is the symbol of all of us, every skin colour, every background, all of the neurodivergent people all over the world in solidarity, support, and acceptance of each other. The infinity represents the infinite possibilities of the human mind, and the unlimited potential of people with divergent minds. I am here in Edmonton to fulfill the promises of the rainbow infinity, to stand in solidarity with all people with divergent minds, and to hold our leaders accountable to it as well.
Many neurodivergent students, who we might call “diverse learners” due to learning in different ways than most students, rely on educational assistants to help them understand classroom content, aid them in keeping up with their peers in their studies, and advocate for them in spaces where the student cannot. These educational assistants, EAs, are critical to the future of neurodivergent people and the neurodivergent community. Education is the key to our people not only becoming employable, but becoming leaders. It opens opportunities. It helps us reach our infinite potential. But substandard, defunded education leads us to poverty, mental illness, chronic physical illness, addiction, crime, and suicide. It leads to a reality where neurodivergent people are reliant on handouts from the government to avoid starvation and suffering.
We know this because it has already happened before. One hundred years ago, the government of this province was locking up neurodivergent people in what was at the time called “Provincial Lunatic Asylums”, these asylums, located in Edmonton and at Ponoka, were places where our people were denied an education, and were instead given substandard, church charity-funded occupational training, comparable to the job training that prison inmates receive. They were discharged with the expectation that they would be able to find a job in an unskilled labour position, and no longer burden the welfare system. This policy was, and remains, an ongoing disaster.
Neurodivergent people, who were continually rejected from workplaces due to ableism, bullying, and abuses they suffered from their co-workers and supervisors, turned to cash jobs to survive. They were forced into sex work and prostitution. They had to sell illegal drugs. They had to steal to survive.
The provincial government looked at all of this crime, and once more blamed neurodivergence and disability for the reason for antisocial behaviour. The provincial government in 1928 took a barely precedented move, and legalized the sterilization of disabled and neurodivergent people. In the 20th century, over 3000 Canadians from coast to coast were legally sterilized by doctors; which means they took away their biological ability to have children, saying that fewer neurodivergent people would mean less crime. Of those over 3000 Canadians, over 2800 were in Alberta. The Hitler-sympathizing Social Credit Party of Alberta amended this law, the Sexual Sterilization Act, to allow doctors to sterilize people held in asylums against their will, and later amended it again so that doctors could sterilize people not held in asylums, and all people of all divergent minds in Alberta were targeted.
Obviously, they could not get all of us, because here you all are. Disabled families. Neurodivergent families. Because our families protected us from government interference in our lives then, as you protect your children from government interference in their education now.
After the progressive conservative administration proudly struck down the Sexual Sterilization Act in 1972, we were once more allowed to have families. In the 1970s, the policy of de-institutionalization, the transformation of compulsory confinement in asylums began to slowly give way to segregated special education in schools, and then decades later we would begin integration of neurodivergent students into public schools with assistance from teacher aides and EAs. We would finally be allowed by the government to pursue a higher education; to not be impoverished, out of sight of our community, but to become leaders in our communities; not just grocery baggers and janitors but engineers, architects, nurses, doctors, and soon we would be in the position of teachers and aides helping our own people achieve their potential.
It is for this reason that assistive education cutbacks are an act of violence against our people. It is turning our back on the future, and walking backward toward the days of segregated Special Ed, asylums, and exploitation. The funding of assistive education is an act of goodwill, an act of the belief in the potential of neurodivergent people and the value of our life.
I have been accused of being too articulate to be able to speak on behalf of other neurodivergent people. That I am too “high-functioning”. My ability to be articulate is only due to the school staff who believed in me even when I was failing my tests. Only due to EAs and teachers who surrendered their time to give me extra tutoring. Only due to the people who saw my strengths instead of my shortcomings and dared to give me an academic challenge. Only due to a mother who fought and fought and fought and fought and fought the systemic red tape that was holding me back from achieving my potential.
I could have dropped out. I wanted to drop out. Every night I had a full day’s worth of schoolwork to do at home because I could not focus with all of the white noise distractions in a classroom. But teachers and school staff and my parents still kept fighting for me when I wanted to quit, and now I hold two bachelor degrees, a bachelor of arts in criminal justice from Mount Royal University, and a bachelor of social work from the University of Calgary. They fought for me and they won.
It is only right that I come here and stand with you, the next generation of parents and educators fighting for the futures of your children and our community. Never stop fighting. Keep solidarity with each other, keep believing in the unlimited potential of diverse learners and your neurodivergent family members. We will win.
While I do not believe that autism and chronic illness are medically linked, it is undeniable that many autistic people are also living with chronic illness.
When I ask the question “how many of us are living with chronic illness” in my autistic self-advocate groups, many of us are ready to disclose our health concerns. The responses often echo in similar tunes: Irritable Bowel Disease, epilepsy, diabetes, hypertension, Ehlers-Danlos Syndrome, Postural Tachycardia Syndrome (PoTS), are all lived experiences of more than one self-advocate that I know. I had never even heard of Ehlers-Danlos until entering the self-advocacy world.
More likely, I believe, instead of saying that autistic people are more likely to be chronically ill, is that we are more ready to be open about our health if we are also openly autistic. If we are working on unmasking our autistic selves and living with pride, it flows that we would also be working on unmasking our chronic health conditions and speaking openly about them because we are holistically working on being an unapologetic person.
I knew that I had Crohn’s Disease, a type of Irritable Bowel Disease, 11 years before I knew that I was autistic. I am still working on unmasking this part of myself, because I do not want to openly speak about spending up to half of my day on the toilet. I masked and felt ashamed of my ill body for many years. But just as I am unmasking my autistic self, I am opening up about my Crohn’s Disease. I do both of these things for the same reason. Unmasking my autism will help autistic people feel less stigmatized and more able to accept and love themselves. Unmasking my Crohn’s Disease will help people with IBD feel less stigmatized and more able to accept and love themselves.
Being autistic and chronically ill can be a lonely experience. Being chronically ill can make you feel isolated, and autism blocks a lot of traditional communication so you feel even more isolated. But you do not have to feel that way, because there are so many autistic people with illnesses, even the same illnesses that you might have.
Send some messages out to an autistic self-advocate group about wanting to connect with somebody who is autistic and chronically ill, and you will certainly find one of us who can share our knowledge on how to manage our health in an autistic-friendly way. There is no need to feel isolated, there are so many of us who would like to connect with you and support you.
Is there something that makes you feel passionate? Autistically passionate? Something you could read about or do every day, consuming as much information about it as you can? Experimenting with it as much as you can? Is there something that you could talk to somebody about for hours?
Many autistic people develop one or more Special Interests, which we fixate on as the most beautiful thing or things that life can offer us. We voraciously consume any information we can find having to do with our Special Interest(s), and play with it in new ways however we can think of.
My earliest memories of trying to make friends with other people is me talking for hours in class about my favourite Nintendo game in grade 3, Donkey Kong 64. I did not want to talk about anything except Donkey Kong 64. I did not want to do anything except play Donkey Kong 64. I had trouble making friends because I could not think of anything else to say, and I was subject to a lot of teasing in school because of it. While my Special Interests have shifted over time, this way of communicating with people, talking for hours about this one subject that the other person probably does not care to hear about, has been my socialization.
When I learned more about autism in my adulthood, I learned that this is such a common part of autistic communication that we have developed a slang word for it: Infodumping. Infodumping is when an autistic person exhausts all of the information about a focused topic that they know of. To me, Infodumping is a love language; not only professing the love I have for a certain topic, I am also risking the rejection that comes with hearing somebody that I admire tell me that my favourite thing is meaningless to them, because I want to develop a connection with that person and this is my hamfisted attempt at developing that connection.
My autistic pride advocacy means that I need to develop connections with many other autistics, to build our community of pride and to work together on projects to promote autism acceptance. I have found that a great way to break ice between myself and a fellow autistic that I need to partner with on a project is to get an Infodump session out. We give each other one or two minutes to spill as much information about our favourite thing as we can, and then we listen to the other person spend one or two minutes spilling out as much information as possible about their favourite thing. This game has worked wonderfully because it requires no setup or supplies, and it can be done in person, over the phone (yikes!), or online. It is a disclosure of our autistic identities that gets seen by the other person, and accepted. Bringing our Special Interests with us and showing them off with pride establishes a space where our autistic selves can be shown off with pride.
We are the Autistic people Born into autistic bodies and brains Celebrated by a global family of autistic people Distant, but never having to be alone
Seeing the world through autistic eyes Communicating through every way we can find Moving in dances, paces, circuits, flails, and flaps To regulate, to celebrate, and to thrive
Inheriting a legacy of resistance, survival, and prosperity Reclaiming the world our Mother gave us Climbing out of the cells that contained us The jails, restraints, seclusion rooms, psych wards, segregated classes
Changing the world to meet our needs Leading our communities to ensure all are included Educating those that want to hear The autistics speak over those who speak for us
Not sick or disordered Not ill or infantile Not divided by function A people united by difference
There is no cure for who we are No miracle potion to fix what’s different You cannot fix what isn’t broken Our natural brains and bodies
Play the call for all born autistic To help build the world we need together And let every one perform our anthem of pride In the language we each have invented
It is 4:00 PM and my partner has not eaten today. He has spent all day writing notes for his online course, and he forgot to shower, drink water, or do anything except his focused task. So I boil a pot of water, add Kraft Dinner, drain it, add the milk, butter, and cheese sauce mix, pour it into a familiar bowl, and I leave it on the table next to his work station. I leave him alone to his work and return to my writing projects. After eating half of the bowl of Kraft Dinner, he thanks me, and states that he needed to eat alone today; that eating in front of another person would be too intimate.
Late in the evening, I have a breakthrough for a new angle, a research question, for an upcoming presentation on neurodiversity. I pace around our home picturing every facet of the new question. Looking up after my thinking is done, he is also stimming – flapping his hands and rolling his neck. Both of us are out of words for the day, but we acknowledge each other’s communication. I am thinking. He is happy.
We understand each other’s daily struggles – overstimulation, fear of the unfamiliar, having a limited resource of social energy that depletes within the first few hours of each day, and leaving tasks half-finished when we can no longer maintain focus. We develop safety plans together for what to do when one of us sees the other mentally struggling. We split tasks in the home based on how much either one of us typically struggles with the task: I can cook but I cannot do outdoor work due to various phobias about nature. My partner can do outdoor work but cannot conceptualize in his brain the process of cooking. Together, we are a unit, more functional than either of us alone.
Apart from the practicality of our relationship, we are enchanted with each other. Leah Lakshmi Piepzna-Samarasinha refers to dynamics like ours as the Lust of Recognition. Relationships are based on empathy, which is based on shared experience. It is very difficult for me to maintain friendships and relationships with neurotypical people, not only because of my autism which disorders my socialization and communication, but because I do not have a neurotypical experience, and they do not have an autistic experience. I can teach people how to be compassionate towards autistic people through education about my experiences, but I cannot teach people what it is like to be autistic in a neurotypical world. But when I am socializing with another autistic person, my experience is empathized because they too have experienced many things that I have. I am recognized. I am seen. When I am in a relationship where my partner and I recognize each other, then nothing that either of us does is considered eccentric or criticized. We are accepted at all times, and loved for our differences.
I wish everybody a safe and healthy LGBTQ+ pride month, and for us all to take our time to acknowledge one of the many ways in which autism acceptance ties in with LGBTQ+ liberation.
One of the number of disability acceptance movements of the last 40 years, which continues to coalesce into a modern understanding of autism acceptance, is the disability justice movement. The disability justice movement was dreamed of in the mid-2000s and propelled by Black, Indigenous, and People of Colour with disabilities, who were trans, non-binary, intersex, and queer, and many of which were non-speaking. These leaders included people such as Mia Mingus, Stacey Milbern, and Patty Berne, who founded disability arts collectives in California and used art to communicate their vision of a world inclusive of disabled people.
The disability justice movement is rooted in the radical idea that all lives are worth living; that all people have equal value as human beings, that disability is not a dirty word, that disabled people have a distinct history and culture, and that all disabled people are entitled to equal inclusion and quality of life as able-bodied and able-minded people.
Disability creates challenges to living in a world created by and for non-disabled people, absolutely. My autism imposes challenges on me. But that’s not because I am broken or unfit, and I don’t want pity. I may not be able to articulate myself verbally, but I can articulate myself through art and writing. I may not be able to socialize like most people, but that gives me more time to study history and my other special interests, which gives me happiness and fulfillment. I stim, and this makes people uncomfortable, but I am not responsible for managing other peoples’ reactions to me. That’s their work to do. It’s not my job to change who I am to make other people comfortable.
These hard-won realizations I have made about myself and the autistic experience are wholly due to social justice visionaries who are Black, Indigenous, People of Colour, trans, non-binary, intersex, and queer. I owe my growth as an autistic person, and an advocate, to intersex Métis autistic Amethyst Schaber and their Ask an Autistic series on YouTube. I owe it to queer Canadian disability justice advocates like Alex Echakowicz and Vivian Ly who are working to bring the models of disability justice to Canada. I owe it queer non-binary autistic self-advocates from around the world, like Yenn Purkis, Noor Pervez, and our recently departed Mel Baggs, who was a visionary queer, non-binary, non-speaking autistic.
For LGBTQ+ Pride Month, I am recommending that we all learn more about disability justice and how the brilliant wisdom of Black, Indigenous, and POC LGBTQ+ leaders, must be what drives our work towards a better world for autistic and neurodivergent people.
If you have not been initiated into the autistic community yet, I want to welcome you, my autistic siblings and cousins, and those caregivers ensuring we live happy, healthy lives. I call autistic people my siblings and cousins, because we have inherited a common genetic heritage. We are all related.
Autistic genes are most often passed down from generation to generation, like our hair colour, skin colour, and height. We know that in 4 out of 5 cases, autism is passed down through family history. If it doesn’t show in your parents, it shows in their parents, or your aunts, uncles, and cousins. Maybe you are neurotypical but have autistic family members; autism is still there in your blood as a recessive trait that may not show up in you but may show in your children or grandchildren. That is worth celebrating. That ties you and I together as family.
How far back does our collective autistic ancestry go? Autism was “discovered” in the early 20th century in Europe and North America, by psychiatrists and psychologists like Grunya Sukhareva, Hans Asperger, and Leo Kanner. But that “discovery” was just because modern psychiatry and psychology only began as a way of thinking in the early 20th century. Autistic people existed long, long before doctors and researchers “discovered” autism. There are many autistic people with no European ancestry, who would not have been on the radar of the early psychologists and psychiatrists. Many Indigenous autistic people are genetically removed from people from the Old World for tens of thousands of years. One hundred years between the “discovery” of autism and the present day is not enough time for a genetic trait to spread all over the world, to the point that 1 in 66 people are autistic.
Knowing this, we can use inductive logic to hypothesize that if there are people with autistic genetics all over the world, even in remote places, and that the last time all of humanity was in one geographic place was over 50,000 years ago in our original homeland in Africa, then the first autistics had to have lived before humans left their original home in Africa, more than 50,000 years ago. We currently have no archaeological evidence of when the first autistic person was born. That means until we have proof of the first autistic, we can only speculate that it was some point in time between the genesis of all life and humanity’s migration out of Africa, over 50,000 years ago. That is a far more probable hypothesis about our autistic ancestors, giving enough time for autistic genetics to find their way all over the world.
Look around your autistic spaces, sharing circles, and support groups. See your autistic siblings and cousins like I do. Support one another just like your own family. We can build a beautiful home together.
Stories about autistic people are frequently in the news. Spotlight stories showcasing autistic people starting their own businesses, achieving awards, and organizing and participating in community events can receive national or international recognition. There are also frequently news stories about social issues affecting autistic people, such as funding or defunding of disability supports. In almost all of these stories, a reporter will interview and quote the families of autistic people, professionals that work in the field of autism support or science, and charities who are associated with autism. But autistic people are very rarely included in stories about us and the issues that affect us.
When a reporter interviews our caregivers and the professionals who work in fields related to autism, but will not interview autistic people, we are made to feel as though we are zoo exhibits. If a reporter wants to learn more about the lions at a zoo, they will speak to zoologists, or the lion’s handlers at the zoo. They will not climb into the lion’s cage and interview them. But autistic people are not zoo animals. We are people, with, we hope, equal status as persons as caregivers and autism professionals are. So we would really like to be treated as people, not exhibits.
The news is the window through which the general population learns about the issues affecting other people. When autistic people are seen and not heard, our needs and our perspectives are not heard by the general population. Without autistic input in the news stories affecting us, the general population will not learn about the things we need to achieve equal rights and social equity.
Stories about autistic people, and autistic culture, are also critically important to growing our community of self-advocates. When news stories are told about the struggles that autistic people face, from the perspectives of caregivers and professionals, that can make autistic people who can pass as neurotypical want to identify as neurotypical in order for the people in their life to not take pity on them. When news stories are told about the lives of autistic people, from the perspectives of those people with lived experience, an autistic person or a person suspecting that they are autistic can connect with the person being interviewed in the news story. When we build connection, we build community. We move towards acceptance, rather than pity. In order to achieve a social acceptance of autism, we need more news stories about autistic people and our daily lives, and we need them told from our perspective. We need interviews, consultations, and spotlights. We need our stories to be widely accessible to a general population, through news media. And we need to be included in all stories about us.
If you are talking about autism, get an autistic person involved.