Glowing Red Nose Syndrome

A long time ago, Rudolph the Reindeer was born. He was healthy, kind, and very intelligent, knowing his own mother, father, and even Santa just hours after he was born. Everything about this young reindeer was perfect, except for this glowing red nose shining like a beacon. His parents were disturbed, and worried about how his glowing red nose would impact his development. Hopefully, it would go away in time.

Santa saw this glowing red nose and became very worried about the growing epidemic of glowing red noses among little newborn reindeer. Santa and the chief toymaker, Elfie Marcus, had attended a reindeer convention that year where the veterinarian Dr. Cordero said that 1 in 166 reindeer was born with a glowing red nose, and it must be treated like an infectious disease. Panels at the reindeer convention gave different and contradictory reasons why so many reindeer were now being born with red noses: vaccines meant to make the reindeer more resilient against deadly diseases were instead poisoning their bodies and making their noses red; the reindeer drinking water was poisoned with toxic heavy metals from the toy factories and it needed to be treated by making the reindeer drink bleach; some panelists even said that red noses could be treated by transferring poop from the body of a normal reindeer into the body of a red-nosed reindeer. Santa, with his seemingly limitless resources, threw money at many different potential treatments and cures for glowing red nose syndrome to make the problem go away.

The year that Rudolph was born, Mr. and Mrs. Claus, along with many of the chiefs of the toy factories and celebrity elves, founded a medical charity called Red Noses Speak. Red Noses Speak sounded the alarm to all the families of the world about the dangers of red noses and how more and more reindeer were being born with these atypical noses. Families, schools, communities, and businesses gave Santa billions of dollars to fund ways to fix the problematic red noses in his reindeer teams. To raise even more money, Elfie Marcus began to use his toy factories to develop special glowing red light bulbs which families and schools bought to raise awareness about glowing red nose syndrome.

Rudolph’s parents, Mr. and Mrs. Donner, enrolled Rudolph in Applied Nose Analysis to make his glowing red nose go away. The board-certified nose analyst put Rudolph in 40 hours a week of hoof-over-hoof therapy to teach him how to make his glowing nose go dim and brown. From age 5 to age 16, Rudolph did 40 hours of ANA every week on top of his 40 hours of reindeer school. Rudolph had no time to rest, no time to play, no time to be a young foolish reindeer exploring his world, but his parents hoped that all of this expensive therapy would help him be normal as an adult. They believed that the earlier you intervene in the child’s life, the easier it is to correct their abnormal nose.

16 years passed and Rudolph still had his glowing red nose. Ultimately, his parents put a fake brown nose over his real one and said “don’t ever let anybody see you with this silly red nose, it’s not for adults”. At the reindeer games, where the reindeer have their tryouts to pull Santa’s sleigh, Rudolph performed at the top of his class. He flew higher and faster than any of the other reindeer his age. But when he landed, his fake brown nose fell off, and everybody could see the glowing red beacon on his face. They laughed, teased him, called him names, and bullied him. He was expelled from the reindeer games for his birth defect and Rudolph ran away into the mountains to be alone and wonder why he had to be so different.

While Rudolph was in the mountains, he met two unlikely friends. He met an elf named Singer, who ran away from Santa’s workshop because she wanted to be a sociologist instead of a toymaker, who taught Rudolph that red noses were all a part of the beautiful diversity of life. Rudolph also met Steve Cornelius, a miner in search of “Silberman’s Gold” who taught him the hundreds of years of history of red nose reindeer, and that Rudolph’s red nose linked him to generations of reindeer much like him. Rudolph wanted to meet all of these red nose reindeer he had never seen before, so they took him to the Island of Misfit Noses. There were all kinds of misfits here, not just reindeer, but toys, animals, and humans all living together even though they looked so different. There were not just red noses, but orange, yellow, green, blue, and purple noses too. They had made a home together, where they had many disputes and did not always agree, but they often gave each other a kinship and respect they did not receive elsewhere.

Rudolph, Singer, Steve Cornelius, and some of the other reindeer with glowing noses returned to the North Pole. Many of the reindeer, seeing that having a dim brown nose was not any more special or better than a glowing nose, apologized to Rudolph and committed themselves to learning about reindeer diversity. Just then, on Christmas Eve, a dangerous fog came over the North Pole and Santa was in danger of missing his deadline to get the presents delivered. He asked Rudolph for help pulling the sleigh.

“Since I have a glowing red nose, will I be guiding the sleigh through the fog?” asked Rudolph

“We can’t have that”, said Santa, “we need our best reindeer out front teaching others about cures and treatments for red nose syndrome, and we expect you to follow their lead”

“Will I be paid as much as the rest of the reindeer on your team?” asked Rudolph”No”, replied Santa, “but we will be able to show the world that we have a progressive and inclusive workplace at the North Pole and you will have an excellent opportunity to list on a resume”

Rudolph and his friends returned to The Island of Misfit Noses. They didn’t need that noise.

“A Desire to Infantilize and Dehumanize Autistic People”

The following is my speech written and delivered for the Neurodivergent NDP’s webinar consulting Autistic Self-Advocate groups across Canada about the National Autism Strategy, attended by federal NDP candidates and allies of our community. This webinar highlighted the Canadian Association of Health Science’s abuse of BIPOC Autistic people during limited consultations on the National Autism Strategy, our fears that the NAS will expand existing eugenics legislation in Canada, and make it more unsafe to be open about being an Autistic person in Canada.

Good afternoon, representatives from the New Democratic Party, fellow advocates, parents, professionals, and allies.  My name is Christopher Whelan, an autistic social worker calling in from the traditional territory of the Beothuk, Dorset Inuit and Metis of the New Found Land.  I thank you all for coming to listen to and consult members of the autistic community on the social issues affecting our community, and make good social policy to create a nation where all of us thrive without having to change who we are or what the Creator has made us.

I will begin by addressing these issues affecting our community, and for the sake of statistical relevance to a world without the COVID-19 pandemic, which I assure you has had a tremendous disparate health effect on all disabled people and aggravated each of the following social realities, I will be using more conservative measures from recent pre-pandemic years.  Please notice how each of these social issues flows into and exacerbates the next.

The Alberta Human Rights Commission has reported that in 2019, 20% of all human rights complaints filed with the Commission were cases of discrimination based on the victim’s mental disability.  It was the second highest population for having their human rights violated, next to people with physical disabilities, just counting cases that resulted in a complaint to the Commission.

Statistics Canada has reported that in 2019, unemployment rates for people with developmental disabilities averaged at 21% for the year.  The unemployment rate was also 21% for people with learning disabilities, and 19.6% for people with other mental disabilities.  The average annual unemployment rate for the general Canadian population was 5.7%.

The Center for Justice and Social Compassion estimates that over 45% of homeless people in Canada have a disability or a mental illness.

The CBC has reported that of the 23 people killed during interactions with the Edmonton Police Service between 2000 and 2017, 21 had a mental disability, a substance use disorder, or both.

A study by Lugnegard, Hallerback, & Gillberg, published in Research in Developmental Disabilities, reported in 2011 that of a geographically diverse sample of 26 diagnosed autistic men and 28 diagnosed autistic women, 70% of respondents fit the criteria of a further diagnosis of major depression, and 50% fit the criteria for an anxiety disorder.

Our final statistic comes from a Lancet Psychiatry article published in 2014.  A U.K.-based study of 367 diagnosed autistic adults reported that 66% of participants dealt with recurring suicidal ideation, and 31% were survivors of suicide attempts.  In Canada, this is supplemented with a study of developmentally disabled people in Western Canada, published in Community Mental Health Journal in 2018, stating that our people in this region of the country are 3.5 times more likely than the average population to have suicidal ideation.  You can look at the side bar of this meeting, at the number of autistic people who have come here to consult and be consulted, and understand that it is reasonable to believe that two out of every three of us are wrestling with recurring thoughts of ending our lives.

What is the cause of our rampant poverty, mental illness, and suicidal ideation?  Our first uninformed guess could be that Autism is the cause of mental illness and suicide.  But there is no study and no passage in the Diagnostic and Statistical Manual of Mental Disorders to suggest that there is a medical link between Autism and these realities.  Instead, it is a social reality, and the way that Autistic people are treated in Canadian society based on statistics.  You can trace our steps backward, to that very first statistic I reported.  The rate of discrimination against people with developmental disabilities including Autism Spectrum Disorder.

The National Autism Strategy is a policy strategy built by a non-Autistic majority to govern the future of Autistic Canadians, within this majority’s own vision for what our future should be, based on their own ideas without adequate consent, consultation, or input from the people who will be affected by this strategy, us.  The lack of consultation is rooted in a desire to infantilize and dehumanize Autistic people, by insisting that we cannot know what is best for our lives because of our disabilities.

The idea that Autistic people need non-Autistic guidance to know what is best for us is normalized at a very young age.  It begins when a classroom teacher tells us that we need quiet hands, zipped lips, indoor voice, eyes forward and making eye contact, and that these are necessary behaviours to deserve love and acceptance in our classrooms and our communities.  These are contraventions of our physical need to stimulate our bodies when we feel overwhelmed by the sensory overload of our schools and our modern world, or the lack of the sensory stimulation we require, which in both cases causes violence to the neural processing of the Autistic mind.  We are taught that other peoples’ comfort and sense of being respected by silence and attentiveness is more important than our need to feel safe in our own bodies.  How can an Autistic child grow self-esteem when other children are taught their bodily autonomy, and Autistic children are taught that we must be punished, detained, restrained, suspended, and held in seclusion rooms if we cannot control the impulses we need in order to feel safe?  How can an Autistic youth feel positive about their self-worth, and like they will be respected members of society, when we are punished in school for being Autistic?  We can find a possible future in Applied Behavioural Analysis, the therapy which is a key component of the National Autism Strategy.

Evidence-based Applied Behavioural Analysis, using the dog training techniques of reward and reprimand, can discipline our body, personality, individuality, into something that behaves the way the non-Autistic professional wants us to behave, say what a non-Autistic professional wants us to say, think what a non-Autistic professional wants us to think.  It can scrub away the nasty, natural Autistic person, and make us behave perfectly like our teachers want us to behave.  But what happens after graduation, when we are stuck for the rest of our life afraid to act out of the way that the Behavioural Analyst taught us to behave decades ago?  When we cannot line up our feelings and our actions, out of fear that our natural actions will offend the non-Autistics around us?  Emotional dysfunction and post-trauma.  The precursors to mental illness, addiction, relationship abuse, self-harm, and suicidal ideation.

Please offer us something more than a therapy that makes us dysfunctional, traumatised, and robotic.  Please, look and see how the systems built for your people which exclude us, your schools and your workplaces and your civic social conventions, are preventing us from building any kind of self-esteem and how they’re making us want to kill ourselves.

As an alternative to offer, here is what Autistics have been doing to create a better future for our people, without the millions of public dollars fed into autism therapy industries across North America in the past twenty years.  I will read from Loud Hands: Autistic People Speaking, from the chapter written by Jim Sinclair, co-founder of the world’s first documented Autistic peer support group, Autism Network International:

“After a life spent among aliens, I had met someone who came from the same planet as me.  We understood each other…it was an amazing and powerful experience to be able to communicate with someone in my own language.  I had sometimes been able to establish meaningful communication with people before, but it always involved my having to learn the other person’s language and to constant laborious translating.  Here, with people who shared my language, meaning flowed freely and easily.”

Sinclair continues to even discuss how peer support helped them to personally care for their basic needs:


Autism Network International was formed in 1993 as a multimedia peer support network using online chat rooms, message boards, penpal lists, and meet-ups at conventions.  Mutual aid networks on three-digit budgets, by and for people with developmental disabilities in the form of “spoonie collectives”, disability justice coalitions, self-advocacy groups, and my own facilitated peer support network born from group social work theory, Neurodiversity YMM, have flourished in the autistic world as a way to build community, self-esteem, and enfranchisement.  We do not teach people that their behaviour is wrong, sinful, or worthy of punishment.  We teach disabled people that they are equally valuable and equally worthy of love and respect just the way they are no matter how dysfunctional they are in non-Autistic society.  Just the way my family taught me.  There are no requirements for what an Autistic person can bring to our community except a reciprocal and unconditional love for fellow Autistics, in contrast to the conditional acceptance and conditional love instilled in us through behavioural analysis therapies.

This is the challenge I pose to the National Autism Strategy.  Can you make a policy which teaches our society to love and accept us unconditionally, rather than breaks us apart and reshapes us into something more easy for you to love?  Can you make a strategy which sees the regressive twentieth-century culture of cure, treatment, and intervention meant to turn us into “normal” people, burns it in a trash bin, and builds a new strategy that observes the unique social value of all Autistic people, regardless of the market value of our skills?  Can we build together a future for Autistic people that does not see us silenced, but uplifted?  With no more Autistic poverty, and no more Autistic suicide?  That is the National Autism Strategy I want to help you build.

Digivolving in My Own Time

Image description: many different baby-form Digimon are shown

I have been explaining my burnout to people in the most autistic way possible. Have you watched Digimon? If not, here is a basic overview of the life of a Digimon. It’s not like Pokemon where Charmander hits a certain experience level and evolves into Charmeleon, and then gets more life experience, and evolves in Charizard. In Digimon, evolution is a cyclical process. Digimon start as babies, doing nothing but eating, sleeping, chatting, and maybe possibly doing a single energy attack that hits enemies with the all the force of getting smacked in the face with a beanbag chair.

When its time is ready, the baby Digimon Digivolves into a basic-level Digimon. The basic-level Digimon has a little more punch behind it, and they are capable of higher-order thoughts. They might be a fire-breathing dinosaur, or a monster that shoots water out of its mouth with the power of a firehose, or a bird that blows people off their feet with gale winds. They have the power to defend themselves from most threats, but not all. Both baby and basic Digimon often pair up with humans, who exhibit their strengths and teach those strengths to the Digimon. Humans can exhibit strengths like courage, kindness, knowledge, generosity, and hope. Humans also protect the Digimon in their vulnerable baby phase.

When a more terrifying threat comes along, a basic Digimon will Digivolve again, into a champion that embodies that strength they learned from their human companion. These champions have the power to create infernos, hurricanes, and kick with the force of a charging rhino.When the champion expends their power, they revert back to a baby, and undergo the whole process again. They eat, sleep, do nothing much, and when their time comes, maybe weeks or years from now, they will become a basic-level Digimon again.And when the cycle continues again and again, the champion will have more stamina every time, and may even Digivolve into a more powerful ultimate form or something even more powerful than an ultimate. But that’s only after many cycles and many times of reverting back to the baby form.

I have been in my baby form for the past 14 months. Because when the pandemic started, I Digivolved from a basic to a champion. I mobilized my community to support neurodivergent people in the process of transitioning from the old pre-covid world to the new world. I created and put out a lot of content to make sure neurodivergent people were not forgotten in the transition. And I burnt out from how much I was pushing myself to create. And this burnout was me reverting from champion to baby status. And the cycle is going to happen again and again.

I thought life was like Pokemon, where I attain a certain level of life experience and I evolve into Charmeleon, and I get more experience and become Charizard. Like, I get more work experience as a social worker and I graduate from grad school and become a Master and that’s me becoming a Charizard. But life’s not like that.

I’m going to keep burning out as a Master-level social worker too. I’m going to go years without being able to work, just like now, not because conditions are not right for me to work, but because I needed to put my superpowers into overdrive and become a champion, and afterwards revert back to a baby.I will always have times in my life where I will need to Digivolve into a champion, for my own survival. And I will need people and other champions to protect me when I go back to being a baby form. I’m sure that this does not just happen to Autistics. I’m sure that everyone burns out and needs people to protect and support them as they take the journey back to being a basic Digimon that can support themselves.

116 Million Flapping Butterflies

In January I began my Master of Social Work degree program. I am hoping that working hard as a scholar, earning honours in my courses, getting selected for a PhD program, and earning a doctorate in social work focusing on professional practice with fellow autistic people will get my ideas about the future of autism services into public policy. Namely, I want the future of autism services to promote our housing, alleviate autistic poverty, stop the autistic suicide rate and get us the mental health supports we need for autistic depression and anxiety. I want autism services to stop researching a “cure” to exterminate what makes us the beautiful people that we are, and instead research ways to make an autistic life more fulfilling and joyful.

My thinking is that as a plebeian without credentials, people in positions of power can choose not to listen to me at any time, and instead wield their power to determine what my future as an autistic person will be, but if I have a doctorate, they will have to listen to me.

The truth is that they do not need to listen to me, no matter what academic honours I earn. If a politician is having their campaign funded from donations by autism lobby groups like the Canadian Autism Spectrum Disorder Alliance (CASDA) or Autism Speaks, they will be more beholden to listen to the words of the organization that gave them their power, rather than a person with a “doctor” prefix in their name on whom none of their power rests. Autism organizations, rather than uplift a person who is critical of their trajectory, would rather uplift a person who is praising the work that they do, especially in front of funders. Even if I obtain a PhD, I suspect that I will have no more foot in the door to change the trajectory of autism services than I currently do.

Even if I do get selected to manage projects for these autism organizations, who will be changed more? Will the organization be changed by my pushing, or will I stay silent in the face of their pathologizing of who I am in order to keep my job and financially support myself? Will the organization change me more than I change it?

And who is to say that my ideas of the future of autism services are the correct ideas? Does the autism world need another white man with a university degree coming in and making changes that he believes will make autistic lives better? Is that not how every fault of the current system began? With a white martyr believing that the sacrifices they had made to get their position of power justified that power that they held over the lives of other people?

Altogether, this is not my ideal future. I want the services to change, but I alone cannot be the one on whom it is the responsibility to change them; not if the changes are to actually be impactful and what our community needs.

What we need is to give every autistic person the power to determine their own best future. And the tools to make their own vision of their best future a reality.

There are 116 million autistic people on planet Earth, if the often-cited 1 in 66 ratio is accurate. Every time that one autistic self-advocate has been uplifted as having the answers about autistic life, it has silenced millions of our voices. This is why every autistic self-advocate who is trying to make the world a better place is made to say, “I am not the voice of autism, I am just one autistic voice”. But that is how the wave of change will start. A few of us will communicate our truth, and that will inspire a few more of us to communicate our truth, which turns into thousands of voices, then hundreds of thousands, and millions of us finding our voice.

Because not every autistic speaks verbally, or is apt at verbalizing what we really want to say, we find our most comfortable way of communicating. We may not be public speaking self-advocates, but we may write essays, or make TikTok videos, or create art, or our self-advocacy may just be hitting and screaming “NO!” or crying when we are made to do something traumatizing to our senses.

Maybe creating a video or writing an essay or getting in front of an audience and talking about our autistic experiences is too much labour; too much to manage. Self-advocacy is something we practice every day. We practice it when we refuse to play at recess with the kids who bully us and instead stay indoors and read a book in a bathroom stall. We practice it when we scream at our ABA therapist and bite their hand. We practice self-advocacy when we eat something that we were told is unhealthy for us, but it gives us comfort. These are not isolated actions; they create waves. When one autistic person sees another person staying indoors at recess to get away from their bullies, they might say “they’re breaking the rules staying indoors”, or they might start a recess book club together, which becomes an impromptu neurodiversity or disability rights club at school. Taking control of what we eat might initially cause us guilt, and over time it might give ourselves more permission to take more control of other aspects of our body; what we wear, how we stimulate ourselves, and who we allow to touch our bodies, and again that may inspire other people, not just other autistic people, to claim such sovereignty over their own bodies. Enough autistic kids biting their ABA therapist might make them quit their job and go work in a bookstore. Actions accumulate, not just just within our own lives, but accumulate in the lives of everybody around us.

You may have heard of the Butterfly Effect; how weather patterns, and even the course of history, changes with the flap of a butterfly’s wings. It means that tiny and thoughtless actions create waves that change the world. This is often a story element in time travel adventures; Homer Simpson travels back to prehistoric times, swats a mosquito, and returns to the present day where the entire world is a 1984 dystopia ruled by Ned Flanders.

This is the real power that humans have. We might become the President of the United States and think that the changes we are enacting are changing the world and originated within us, but in reality a person becomes the President of the United States through the decisions of millions of people to leave their house and cast a vote for them on election day, and millions of tiny actions influenced each person’s decision to leave their house and cast a vote for the President, and countless tiny actions throughout the course of human history influenced the nation’s current realities that the President must address. The story of the world is never one person’s pen writing history. Each of us makes dozens of decisions each day, which will echo throughout the future; our own future and the future of the planet, in ways that are incomprehensible to us.

Each of us has this power, whether we are aware of it or not. Each of us is creating ripples that will change the world even if we do not believe that we are.

This must be the goal of autistic self-advocacy; to awake autistic people to the ripples that each of us is creating. Teaching autistic people that we do not need to hold the reins of power; to be the CEO of an autism charity, or be a member of our country’s legislative body, or be an autism researcher, in order to create the changes in how the world perceives autism that they want to see. Autistic self-advocacy must be about awaking the potential for other autistic people to reclaim their power. Whether that’s a decision to flap or have quiet hands, a decision to eat our safe food or eat something that makes our autistic body feel sick, to stay silent when a person in authority over our life tells us to do something, or to scream and bite.

The power of a jumbo jet to change weather patterns is not more powerful than 116 million butterflies flapping their wings. The power of an autism charity is not more powerful than 116 million autistics flapping our hands.

Autistics Have Always Been Here, and We’re Not Going Away: Part 1

A peoples’ history empowers them.  When you have history, you have identity.  When you have identity, you know that you are a valid presence in this world.  You know that you are not deviant, or disturbed, or diseased; you are a person.  When you hear the stories of people like you surviving against odds, you believe in your own survival against the odds that you face.  When you hear stories of people like you existing long ago, you believe that people like you will still be born far into the future.  Invalidating a history means invalidating a people; both their past and their future.  As autistics are a people who have been continuously invalidated, our history has been neglected and in many cases destroyed. We do not know where or when the first autistic person was born, because history was written about Great Men; kings, conquerors, philosophers, bishops, scientists, and the financial elite.  Rarely do we find written records about what life was like for the average person, and even more rarely do we find records about populations of people that the Great Men tried unsuccessfully to exterminate.  Destroying a people’s history is a part of that extermination process. 

We know that autism was first diagnosed in the medical sense in the early 20th century, by child psychologists such as Grunya Sukhareva, Hans Asperger, and Leo Kanner.  But our written history of neurodivergent people prior to the modern field of psychology is shrouded in speculation.  We can look to other traditional ways of knowing beyond science, such as mythology, to speculate the positions that disabled and neurodivergent people held in their communities.  These mythologies taught neurotypical people how they should view neurodivergent people, and how these mythologies informed the worldview and perspectives of future so-called unbiased and evidence-based sources.

One more note before we begin: the history I have collected so far is very “Eurocentric”, meaning it centers the mythologies, philosophies, and knowledge of European and Mediterranean peoples, my ancestors. There are knowledges and explanations for disability found all over the world, and even explanations for neurodivergence. But I feel that as Settlers, we must learn that our lack of cultural context shrouds our ability to understand the context of many traditional knowledges and I feel that I would get much of it wrong for that reason. Not that it is “exotic”, or “oriental”, but to say that we must defer to scholars who have the relevant community permission to guide our understandings of these traditional knowledges. Therefore, until a scholar with the relevant community permission writes an academic journal confirming that a traditional knowledge was used to explain neurodivergence, I will not include them in my records of autistic history and neurodivergent history. Until then, I must stick with only that which can be traced through time by how they have directly led to the medical models of autism we observe today. Since the ways that we understand autism are deeply rooted in eurocentrism, colonization, pathologization, and white neurotypical supremacy, unfortunately the history we can confirm as informing our understanding of autism and autistic people is similarly rooted in oppressive systems.

The Changelings: Divergent Minds and Bodies in the Pre-Scientific European and Mediterranean world

A child must always have someone nearby until it is six weeks old. Otherwise, an old woman from the woods or the mountains could come and exchange a physically and mentally retarded, malformed changeling for the infant… However, if–through negligence–the misfortune does occur, you should take prompt notice of it. Then you need only make a switch from the branches of a weeping birch tree and beat the changeling severely with it.” – Karl Haupt, The Legend Book of Lausitz, 1862

Self-advocacy was not born with Gunnar Dybwad…it was born the first time a suspected changeling tried to run away before anyone could kill him.” – Mel Baggs, The Meaning of Self Advocacy

In the pre-scientific world, it was believed that children who were born with a developmental disability, whether a physical or neurological developmental disability, were not human children, but the children of fairies, trolls, and other magical beastfolk.  The idea was that fairies, hags, and other creatures from fairy-tales were conspiring the downfall of human communities, and one of their tricks to do this was to steal human babies from their cradles, replacing the infant humans with a fairy child, with an illusion spell cast on them to make them appear human (Köhler, 1886, p. 154). The fairy child, called a “changeling”, would then grow up in the human community until a day when it would wreak a terrible storm of vengeance upon the humans; poisoning the water well, throwing the winter’s store of food into a fire, casting spells on the other community members to become sterile, or fall out of love with their spouses, or murder children. The changeling child was a bomb the fairies placed into the cradle of a human family, until the time it would be ready to carry out its mission and destroy the human settlement.

It was believed that as a changeling grew older, the spell would fade away, and a changeling would take on an abnormal appearance, or they would exhibit behaviours inconsistent with normal human activities and behaviour (Simpson, 1972, p. 25). Physical disabilities, such as a hunched back, crooked posture, or paraplegia would be explained as the abnormal appearance of a monster.  Neurological disability, in this myth, would cause the changeling child to fail to verbally communicate or understand verbal communication, or fail to interpret social cues.  Whole or partial deafness, whole or partial mutism, echolalia, stuttering, tics, and atypical behaviour was blamed on a changeling not being human, and not being able to understand human communication, as if they were not human at all.  The differences between an abled person and a disabled person, in the changeling myth, were proof of the child not being of human birth.

In communities that believed in the changeling myth, the penalty for being born physically or mentally disabled was death. According to the stories we have, disabled children and youth were beaten with wooden switches (Haupt, 1862, p. 69), or drowned in rivers, brooks, or cauldrons (Rhys, 1901, p. 62). But what if you do not have the heart to kill your own child? In some changeling myths, the fairies will return your child to you if you tell the changeling, your disabled child, every day that you do not love them and that you wish they would go away (Croker, 1825, p. 65).

The changeling myth is known to have been part of local traditions as far west as Iceland (Simpson, 1972, p. 25) and Ireland (Croker, 1825, p. 65), as far east as Egypt and Arabia (El-Shamy, 1980, p. 179), and myths to explain sickle cell anemia in children similar to the changeling myth are part of traditional stories as far south as Nigeria (Nzewi, 2001, p. 1403).

The changeling myth is very much still a part of our modern reality of autism. Jenny McCarthy’s anti-vaccination organization, Generation Rescue, which promotes injecting bleach into the bodies of autistic children, directly invokes changeling metaphor when it refers to “rescuing” children who have been “abducted by autism” (Gross, 2012). Autism Speaks directly invoked changeling metaphor in its infamous and extremely ableist “I Am Autism” television promotion, which stated, “I am autism. …I know where you live…I live there too…I speak your language fluently…I derive great pleasure out of your loneliness. I will fight to take away your hope. I plot to rob you of your children and your dreams.” (Autism Speaks, 2009). The barbaric cultural justification for killing suspected changelings abets our current realities around autistic filicide; the killing of autistic children by their caregivers, a too-often occurrence in today’s world and which we mourn along with all disability filicide on the Disability Day of Mourning every March 1st.

Sins of the Parents: Medieval European Explanations for Childhood Disability and Neurodivergence

As Latin Christianity became the dominant ideological force in Europe, traditional explanations for neurodivergence, and disability were replaced with new explanations using canonical justification and the new early medical model of reductivism. A historically significant depiction of the clash between the old heathen myths around changelings, and the new Christian religion attributing a person’s woes to their moral degeneracy, is found in William of Canterbury’s record of the life of the saint Thomas Becket.

In one tale about the miracles he had performed, written sometime between the years of 1172 C.E. and 1179 C.E., William of Canterbury wrote that Thomas Becket visited a child afflicted by a medical condition which impeded his physical development.  In William’s account, the folk doctors of the community blame the child’s developmental disability on him being born a changeling.  However, the biographer dismisses this heathen worldview, stating that “no-one of sound mind credits the fabulous nonsense of the people, who believe children to be substituted or transformed” (Canterbury, 1172-1179, p. 165).  Important to note that in this story, he uses a Latin word for chronic illness causing malnourishment – syntecticus – in his chronicle of Becket’s miracle, despite neither Becket nor the common folk in the tale using such a term.  The use of a medical term to describe a disability or chronic illness, syntecticus, denotes the cultural struggle of this time; the term changeling, which is holistic, mystical, and informed by traditional knowledge, and syntecticus, which is reductive, scientific, and has a foundation in the medical perspective of diagnosis and treatment.  A changeling is a monster and at no point a human being, and a child with syntecticus is a human being afflicted by a chronic illness.

In the tale of the child believed to be afflicted by syntecticus, William of Canterbury notes that the child’s parents are unwed.  Even worse, the father is a priest, and has committed the sin of breaking his clerical vow of celibacy.  The fact that William highlights this fact is a clue to the changing views on disability in Europe due to the supremacy of Latin culture; that in the eyes of the Latin Christian world, childhood disability was not caused by fairy tale monsters stealing away a human child and replacing the infant with a changeling, but a punishment from God for breaking holy vows and failing to repent for sin.

“Adultery, masturbation, homosexuality, porn — if you are addicted to these, I say to you in the name of God … when you get married and have children, there is a high possibility of bearing (autistic) children,” – Father Dominic Valanmanal, 2019

Developmental disability being blamed on the sinfulness of parents is also relevant to our current realities in the autism world. In 2019, Father Dominic Valanmanal, an Indian Catholic priest, compared autistic children to animals, and stated of the parents of autistic children that, “They lead an animal-like life. They copulate like animals. They bear children like animals. Therefore those children also, will be like animals.” (ABC News, July 17th, 2019). Father Dominic Valanmanal claims to have “cured” children of their autism through the power of divine intercession, and hosts private church retreats for autistic youth where they are “cured” of autism through the intercession of faith in Jesus Christ (Marian Retreat Center, n.d.).

Blaming parents for their childrens’ autism has even influenced secular and so-called bias-free sources on autism. Leo Kanner, the child psychologist and one of the “founders” of autism, as well as his protégé Bruno Bettelheim, credited the cause of autism to “refrigerator mothers”; mothers who are uninterested in parenting their children. Kanner wrote of autistic children in 1949, “Most of the patients are exposed from the beginning to parental coldness, obsessiveness, and a mechanical type of attention to material needs only. They were the objects of observation and experiment conducted with an eye on fractional performance rather than with genuine warmth and enjoyment.” (Kanner, 1949, p. 425). He writes about autistic meltdowns and abnormal behaviour as if they are pathological attention-seeking behaviours directed towards parents uninterested in their children, “the autistic children, who otherwise have little dealing with the parents, force them with the tyranny of temper outbursts to participate in their sometimes very elaborate obsessive-compulsive schemes” (Kanner, 1949, p. 425). Bettelheim proposed that a potential autism treatment would be milleu therapy, enacted by apprehending autistic children from their parents and placing them in care homes where a theoretically more interested caregiver would give them the parental attention that the lack of was believed to have caused the autism (Bettelheim, 1967, p. 406).

Even in this new era of Latin supremacy in Europe after the Roman Empire, the changeling myth, along with other pagan myths, pervaded European society and were continually practiced.  The church could not be everywhere at all times, and folk doctors still played a prominent role in village leadership, knowledge-keeping, and medicine.  The Catholic church, with mixed success, resisted the idea of disabled and neurodivergent children being the children of fairies, but a new branch of Christianity, beginning in the 16th century CE, would maintain the changeling myth until the modern era.

Return of the Changeling Myth: Protestant Christian Views on Developmental Disability

“If I were the Prince, I should take the child to the Moldau River which flows near Dessau and drown him.” – Martin Luther, 1540, p. 9)

In his book of Table Talks, Martin Luther, the founder and father of Protestant Christianity, wrote of an encounter which he had with a disabled youth:


Changeling myths persisted from pre-Christianity to Protestant Christian theology, with some notable updates. Fairies, hags, trolls, dwarves, and other creatures that stole infant humans and replaced them with changelings were substituted with The Devil (Heyl, 1897, p. 277). Satan was now the central figure replacing the unbaptized infants of impious parents with devil spawn. Infant baptism then became a protective ward against the Devil and his schemes to replace human infants with devil spawn.

The Malleus Maleficarum, adopted as canon in both Catholicism and Protestantism (Henningson, 1980, p. 15), states that developmentally disabled children were born of witchcraft and covenant with The Devil (Kramer & Sprenger, 1487, p. 45), and that being born outside of a marital covenant blessed by God is the cause of developmental disability.

It is important to note the adoption and adaptation of changeling myths into Protestant and Catholic canon because of colonization. In the Imperial Era, when Catholic and Protestant overseas empires spanned the globe, the evangelical work of missionaries meant the displacement and suppression of local understandings of the causes of developmental disability with these evangelical understandings. Baptism and conversion became marketed as a way to prevent autism, as only consecrated marriages and the extermination of heathen spirituality could cause the end of developmental disability (Ashlimann, 1997). Colonization and evangelism laid the foundation for the modern medical perspectives of Autism Spectrum Disorder being recognized around the world, by enacting cultural and physical genocide towards non-European worldviews and their practitioners.


Extermination, stigma, segregation, and the prevention of autistic birth (essays for another day) throughout our history has led us to our current realities where, as autism rights movement co-founder Jim Sinclair said, “the tragedy is not that we’re here, but that your world has no place for us to be” (Sinclair, 1994). Neo-colonial, settler society was created to meet the needs of neurotypicals, and we will never be neurotypical. And many of us do not want to be. We just want our world and your world to be integrated together.

The first thing we have sought out to do, in order to integrate our worlds, is the creation of an autistic community. Before the Information Age we never had the tools or opportunity to develop community between autistics, and now we have those tools. We are working together to develop an idea of what being an autistic means; through shared language, culture, art, literature, music, identity, and history. As we form this autistic identity, an ongoing process, we can advocate for what our community needs to thrive. Autism advocacy is transforming, and must transform, from a parent advocating for their autistic child, or an autistic person advocating for themself, to a communal action where all autistics advocate for the community. That is how we build a legacy. That is how we ensure a future where autistic people will be born into an integrated world where their needs are met just as easily as the needs of neurotypicals are met.

We have always been here. We will always be here. We have survived thousands of generations of people trying to get rid of us. We will survive any future attempts to cure autism or prevent autistic people from being born. In seeing our past and our future, we need to stop thinking of autism in terms of a single life, and in terms of a very long, and very open-ended story.


ABC News (July 17th, 2019). Indian Catholic priest who claims parents’ sins cause autism in children cancels Australia tour – ABC News.

Ashlimann, D.L. (1997). Changelings: An Essay by D. L. Ashliman (

Autism Speaks. (2009). I Am Autism commercial by Autism Speaks – YouTube.

Baggs, M. (2012). The Meaning of Self-Advocacy. In Loud Hands: Autistic People Speaking. Kindle version.

Bettelheim, B. (1967). The Empty Fortress: Infantile Autism and the Birth of the Self. New York: Free Press.

Canterbury, W. (1172-1179). A Miracle of Thomas Becket: De Puero Syntectino. In Medieval Disability Sourcebook: Western Europe (2020), editted by McNabb, C.H. Punctum Books.

Charland, L.C. (2011). Moral Treatment in the Eighteenth and Nineteenth Century in Serious Mental Illness: Person-Centered Approaches (Patient-Centered Care). University of Western Ontario.

Croker, T.C. (1825). Fairy Legends and Traditions of the South of Ireland. London: Murray.

El-Shamy, H.M. (1980). Folktales of Egypt. Chicago: University of Chicago Press.

Gross, Z. (2012). Metaphor Stole My Autism: The Social Construction of Autism as Separable from Personhood, and its Effect on Policy, Funding, and Perception. In Loud Hands: Autistic People Speaking. Kindle version.

Haupt, K. (1862). The Legend Book of Lausitz, 71. Leipzig: Wilhelm Engelmann Press

Henningsen, G. (1980). The Witches’ Advocate: Basque Witchcraft and the Spanish Inquisition. University of Nevada Press

Heyl, J.A. (1897). Folk Legends, Customs, and Beliefs from Tyrol. Brixen: Catholic Political Press Association.

Kanner, L. (1949). Problems of Nosology and Psychodynamics of Early Infantile Autism. American Journal of Orthopsychiatry, 19: 416–26

Kohler, J.A.E. (1886). The Legend Book of the Erzgebirge, 198. Schneeberg and Schwarzenberg.

Luther, M. (1540). Works, Table Talks 1531-1546. Republished by Böhlaus, W.H. (1912).

Marian Retreat Center. (n.d.) About Marian.

Nzewi E (May 2001). Malevolent ọgbanje: recurrent reincarnation or sickle cell disease?. Social Science and Medicine, 52 (9): 1403–16. doi:10.1016/S0277-9536(00)00245-8

Rhys, J. (1901). Celtic Folklore: Welsh and Manx. Oxford University Press.

Simpson, J. (1972). Icelandic Folktales and Legends. Berkeley: University of California Press.

Sinclair, J. (1993). Don’t Mourn For Us. In Loud Hands: Autistic People Speaking. Kindle version.

Autistic History Calendar: February 11th – The Founding of Autism Speaks

CW: Autism Speaks, ableism, filicide


On February 11th, 2005, Autism Speaks was founded by Bob and Suzanne Wright of the Wright family fortune, built on brands like General Electric and the National Broadcasting Corporation (NBC).

Using its deep pockets of billionaire philanthropy, mergers with other prominent autism cure organizations, and celebrity and political endorsements, Autism Speaks would become the largest cure-driven autism charity almost from its birth to the present day in 2021. The blue puzzle piece, the chosen logo of the charity, would become synonymous with the autism spectrum itself in mainstream culture, overruling symbolism used by actual autistic people such as the Rainbow Infinity and Autism Pride Flag.

Autism Speaks has marketed itself using the imagery of autism as a life-destroying chronic illness, and autistic people as monsters in society to be avoided. In 2009, an advertisement ran for Autism Speaks where director Billy Mann narrated, in a haunting voice, ““I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up, you will cry, wondering, ‘Who will take care of my child after I die?’ And the truth is, I’m still winning. And you’re scared. And you should be. I am autism. You ignored me. That was a mistake.” This marketing has caused untold stigma against autistic people in their communities.

In 2006, Autism Speaks filmed and published the documentary Autism Every Day. During this documentary, a board member of Autism Speaks, Alison Tepper Singer, attested that she has contemplated driving her family car off of the George Washington Bridge in New York City with her autistic daughter Jodie, but resisted the urge because she did not want her neurotypical daughter Lauren to grow up without a mother. This interview was conducted in the same room as her daughter Jodie, while Jodie played close by. Just four days after Autism Every Day was shown to the public, Karen McCarron murdered her autistic daughter Katie McCarron by placing a white plastic garbage bag over her head. Karen McCarron was sentenced to 36 years imprisonment for first degree murder.While Autism Speaks removed references to a cure from its website in 2016 due to outspoken backlash from autistic self-advocates and self-advocacy organizations, research into causes and cures for autism remain its primary goal. In their 2019 IRS Form 990, Autism Speaks states, “our research and science efforts continue to focus on identifying genetic influence on autism, which may facilitate personalized treatments. These efforts include offering 10,000 whole genome sequences that are being accessed by more than 180 researchers from 40 institutions across 16 countries”. It is clear that while Autism Speaks is not publicly stating that their goal is to eliminate autism, their expenditures are revealing otherwise.

Policies that Autism Speaks has been a consultant for include the 2006 Combatting Autism Act (now called the Autism CARES Act) which has funneled billions of American tax dollars into the psychologically abusive and often physically abusive Applied Behavioural Analysis industry, the MSSNG database co-owned with Google and the Toronto SickKids Hospital which collects DNA samples of autistic people without their permission and uses them to research a cure for autism, even if the unwilling DNA donor morally objects to a cure, and Canada’s upcoming National Autism Strategy to shift the policies of the strategy in favour of Autism Speaks’ industry interests.

Let’s all laugh at celebrities that never learn anything tee hee hee

Image description: Two opposing photos. On the left, Kylie Jenner sits in a gold-gilded wheelchair, with short black hair, a black corset, and black heeled shoes. On the right, Sia sings into a white microphone. Sia has a giant white bow in her hair, black and blonde hair which is divided down the middle into both colours, and a white dress

CW: ableism, objectification of women, objectification of disabled women, sex, exploitation

It was the year 2015. 50 Shades of Grey was playing in theaters. Children of all ages were performing “The Dab”. The most well-funded primary electoral campaign in the history of the United States was singing the praises of John Ellis “Jeb” Bush.

From this inconceivable time in history, a rising, soon-to-be-self-made-billionaire entrepreneur, helped only by her generationally wealthy family, her appearances on one of the most widely-circulated reality shows on cable television, and a media circus that fed every one of us proles our daily updates on the brand of yogurt she was eating for breakfast whether we wanted to know or not, would make her indelible mark on Western civilization. But not before being responsible for one of the most widely criticized instances of shitting the bed of disability representation we’ve seen this century.

Kylie Jenner was the front cover model on the December edition of Interview magazine. The cover photo featured her looking straight forward, like an inanimate object, in a wheelchair plated with gold. The photo itself made her look like a sex toy; a motionless mannequin unable to move, feel, or think. If in this photo Kylie Jenner was meant to portray a living woman, then the woman is without cognitive function; non-communicating, non-thinking, non-feeling. In this photo where Kylie is in a gold-plated wheelchair, she occupies the space of a physically disabled woman, portraying these abominable characteristics.

Within the pages of her article in the magazine, where she talks about her life, her values, and her hopes for the future, more photos from the shoot are displayed. She lays motionless and barely covered in a shipping box, fully portraying a sex doll in transit. In other photos she holds a motionless pose with stiff joints, as she is carried off by men.

When you look at these photos, this art exhibit, what do you feel? I invite you to identify and sit with your feelings.

In this photo shoot I see that a model, an abled model with no experience of being disabled, is occupying the space of both a disabled woman and a sex doll. Two things occupying the same space, represented by one form, means that they share the same characteristics. It is to say that a disabled woman is a sex doll. As a sex doll is an inanimate, unfeeling, unthinking, impersonal object for men to use and abuse, so too is a disabled woman. When I look at the man carrying the wheelchair-using, stiff-bodied, incapacitated sex doll/woman, the message I see is, “get yourself a disabled girlfriend lads, she can’t fight back.”

Disabled models, who have a challenging time getting work in an extremely ableist industry, were justifiably angry that an abled model was taking up their space, which is to say, taking up their job. Models who use wheelchairs as mobility aids are nothing new, but very poorly represented.

Nermin Hassan, who uses a wheelchair due to muscular dystrophy, wrote in an article for the modelling agency Models of Diversity:

“There are many undiscovered people sharing the same values as one another (about) feeling alone and abnormal as they have never seen someone they can relate to their selves in the media. Unfortunately placing a well known able-bodied model in a wheelchair such as Kylie Jenner doesn’t count.”

Disabled models began to take back their space by wearing a similar kink outfit as Kylie did in her photoshoot and posing with their actual mobility aid wheelchairs, and telling their stories about how their wheelchair is more than just a prop.

Other women who use wheelchairs as mobility aids fought back over Twitter:

Text: “@KylieJenner wow being in a wheelchair is so fun and fashionable! #Ableism is the ultimate fashion statement!”
Photo: Kylie Jenner’s photo of her in a wheelchair on the left reflected by the author’s photo of being in a wheelchair on the right
Text: “As someone in a wheelchair @KylieJenner @InterviewMag, this is offensive. My chair is not haute couture”
Photo: Kylie Jenner in a wheelchair

So why am I bringing up something that happened in December of 2015 now, at the end of the hellish epoch of 2020?

To bring up the lessons that we and the media circus learned five years ago about disability representation, which can be summarized as thus:

  1. If you are portraying a disabled person in an art statement, consult with disabled people so that your statement has the best chance of being positively received by the demographic.
  2. If you are portraying a disabled person in an art statement, hire an artist with that disability, or at least who uses that aid! If you cannot find an artist with the disability being portrayed, or who uses the aid that is part of the statement, you simply did not look.
  3. Knowing a disabled person does not give you expertise in disability representation.
  4. Make sure that disabled people are the ones telling, and in control of, the story.

These are four simple lessons that we accepted, learned, and moved on toward a better future of disability representation.

Photo: the main character of Sia’s upcoming film “Music”, about a non-speaking autistic woman

Just kidding.

Australian singer/songwriter/voice actress/director Sia is publishing a film starring Kate Hudson as Zu, a woman living with addictions, who becomes the sole guardian of a non-speaking autistic woman named Music. Music, contrary to the disability representation lessons we had already learned from the Kylie Jenner disaster, will not be portrayed by a non-speaking woman, an autistic woman, or even an openly neurodivergent woman. The neurotypical Maddie Ziegler will instead be putting on a performance for us of what Sia thinks it means to be a non-speaking autistic woman.

Under Sia’s direction, Maddie learned how to portray autistic people by watching exploitative videos of autistic meltdowns uploaded to Youtube by parents of autistic children, and consulted with the pro-cure hate organization Autism Speaks to learn about autistic people.

Instead of casting an autistic actor, Sia stated that “casting someone at her level of functioning was cruel, not kind, so I made the executive decision that we would do our best to lovingly represent the community.

Sia has broken all four of these very simple, critical, four rules of representation, and has abused autistic people on Twitter who have put emotional labour into teaching her compassion for our community.

So if Sia is unwilling to learn from December 2015, is there anything that we can learn?

Can we learn how to take back the space that Sia has stolen from autistic people, as the wheelchair-using models who took back their space from Kylie Jenner did?

Can we learn how to support each other when we are collectively abused by a high-profile celebrity punching down at less-powerful people?

Can we learn how to enforce these four very simple reference points for making art that the people depicted by it will enjoy?

And can we learn how to ensure that we are not back here in 2025 with another privileged voice speaking over disabled people believing that they can freely use our voice and our image for their profit and playtime?

When is the Best Time to Tell Somebody That They Are Autistic?

A parent of an autistic child reached out to me this week and asked me what I felt was the best time to let their child know that they are autistic.

The stories that I have heard from other autistics, when their family had the autism talk with them, was that it was a range of reactions. Some people started a grief process where they tried to “overcome” autism by working harder to be a neurotypical, but ultimately after years of struggling, had a messy collapse under the pressure of trying to be something that they were not, leading to mental health issues and self-destruction.

I have also heard that some of us experienced a deep feeling of relief when they found out that they were autistic. “Thank God”, they thought, “I thought there was something wrong with me”. Autism became a new way of viewing their abilities and their limits; of respecting themselves and their boundaries.

Finding out that you are autistic may also lead to poor self-esteem if you have a poor view of autistic people. Unfortunately, society imprints all kinds of messages on impressionable minds about how autistic people are burdensome, and unable to do certain things, and many tired, broken, untrue myths about ties to criminal activity and violence. If a person has a poor view of autistics, and finds out that they are autistic, it may be that they could view themselves as worth less than another person.

For the latter reason especially, before a conversation about someone being autistic, I believe that a home should be prepared to welcome and celebrate an autistic person. Family members should have a positive view of autistic people, nurtured through exposure to autistic culture and expression; literature and art created by autistic people about our experiences and our community. This is for two reasons: the best results of letting somebody know that they are autistic are followed up by messages of acceptance, love, and wholeness, and because a newly-realized autistic person will have many questions that should be answered by somebody who they have a deep level of trust with. I feel that autistic people are more likely to be open and candid with somebody who has earned their trust than with a professional at an autism center or somebody who has answers to their questions but whom they just met. So, start with preparing a home that welcomes and celebrates autistic people. Then a conversation can take place when the person is ready.

It may be likely that a person suspects that they are autistic because the signs just naturally appear. Young autistics may notice that they are more passionate about certain subjects than other people, and they notice that other people do not share their passion. Young autistics may realize that they prefer to wear the same clothes year after year while many of their peers proudly display new wardrobes every September. They may notice that they seem to attract other neurodivergent people to them, and have questions of why that is. These questions could potentially be an opening for a positive conversation about autism.

It may also be that a good time to discuss autism is when a young autistic is met with failure after failure trying to socialize with others, trying to keep up in a mainstream classroom, having ill success in romance (itself based in communication and socializing), losing job after job, or suffering from episodes of burnout. A conversation about autism when a person is at a low point may be more likely to elicit that feeling of “oh there’s nothing wrong with me after all”.

The most important part to me is that connection and acceptance. Finding out that you are autistic can be a traumatic experience, just like trying to live as a neurotypical when you are autistic is a traumatic life. To me, the opposite of trauma is connection. That is why I thrive now for the first time in my life; my connection to other autistic people and to family who accepts and loves me exactly as I am.

Autistic Special Interest or Addiction?

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.

Neurodiversity Storytime

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!