Autistic and Chronically Ill – You Belong Here

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.

Infodumping: Autistic Love Language

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.

Anthem of Affirmation

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

Autistics in Love

Image description: Two blue silhouettes of people embracing each other with three blue hearts above them, over a black background

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.

BIPOC Trans, Non-Binary, Intersex, and Queer Autistic Leaders

Image Description: The LGBTQ+ Pride Flag, with red, orange, yellow, green, blue, and purple horizontal stripes from top to bottom, and white, pink, light blue, brown, and black V-stripes on the left side.

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.

One Autistic Family

Image Description: People of many colours hold hands around the Earth

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.

Include Autistic People In News Stories About Us

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[Image description: A television news reporter interviews a woman outdoors, while a camera person films the interview]

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.

Healthy Autistic Sex

Image may contain: cloud, sky, ocean, shoes, outdoor and nature
[Image description: a silhouette of two hands holding, the background is the ocean during a sunset]

[Content warning for sex, sexual abuse, eugenics, child luring, ABA]

It is for some reason still confusing to most people that disabled people have sex. Even able-bodied disabled people are not expected to be sexual. This comes from our history of disabled people being forced-sterilized under eugenics laws, and cultural ideas that people with divergent brains cannot give valid sexual consent.

For so many decades, it was abominable to consider that disabled people were procreating and birthing another generation of disabled people. It was the goal of eugenics to “thin out” the number of disabled and neurodivergent people, and to promote the breeding of neurotypical people. But we are still here. Eugenics still echoes in the ways that we think about disabled and neurodivergent family life, and this has caused barriers to healthy sex lives for autistic people.

Many autistic people who were in special education classes did not receive sex education, like their peers. Because of this, topics like consent, bodily autonomy, choice, relationship abuse, and sexual health were not taught to them. Even if they were taught, how can any lessons about consent and bodily autonomy be taken seriously when BCBA’s are grabbing their wrists and punishing them for behaving in ways that are intolerable to typical people? How can we teach a child not to take candy from people who want to sexually abuse them, and that they should take candy from a BCBA as a reward for acceptable behaviour? How can we teach an autistic child how to differentiate between people who use positions of social authority like priests and Scout leaders to sexually abuse people in their care, and the autism professionals that they will be punished for not obeying?

Being raised up in this environment where you are at the mercy of professionals and authority figures, while other children are being taught the importance of their own autonomy, sets us up for normalizing relationship abuse and sexual abuse. An abuser who pouts and gets angry at us for not making ourselves sexually available when they want feels an awful lot like the caregiver or teacher who pouted and got angry at us for stimming in class. As we were taught to live to impress the people with authority in our life, so too were we taught to live to please anybody who claims authority over our bodies.

When we do find sexual partners who respect our bodies and respect our autonomy, we are sometimes told that they are with us because it is easy to make a disabled person consent to sex. We are also told that we have few choices, and we need to “settle for what we can get”. These are deeply hurtful sentiments that are too common.

Neurodivergent people have the right to refuse sex from anybody for any reason, just like anybody else. We have a right to healthy and fulfilling sexual relationships, and to have our autonomy respected. And we have a right to be alone if nobody in our lives can live up to these very simple expectations.

To promote healthy sexual relationships for autistic people, we need to expand what “sex” is. As sex is any bodily stimulation shared between people, if the one-dimensional “neurotypical sex” is dangerously stimulating to the sensory profile of an autistic person, or not stimulating enough, autistic people can change what “sex” means in order for it to be satisfying. Senses and stimulation can change to meet each individual’s needs. It is our body, and our relationship. Nobody outside of our bedroom can tell us if we’re doing it wrong.

We also need to expand how consent is given and taken away. Verbal cues such as “I want you” and “stop” are not useful when an autistic person is in non-verbal space, as we often go into when we are overstimulated; the circumstance where we will most definitely need to be communicating that we need this to stop. Healthy autistic sex will have multiple cues for starting and stopping, utilizing both verbal and non-verbal communication. For example, three hard taps on a bed, covering the face with one or both hands, or violent twisting of the body could be non-verbal cues to stop. Ignoring non-verbal cues to stop sex must be taken as seriously as verbal cues to stop. The non-verbal cues must be recognized as if the person was screaming “STOP!!” at the top of their lungs.

We also need adequate sex education for autistic youth and adults, to teach those important lessons about consent, bodily autonomy, sexual health, and how to recognize abuse. We need these teachings delivered using the preferred communication of the autistic person receiving the lesson. And more than that, we need adults to model these teachings about consent, and respect the bodily autonomy of autistic people of any age.

Make Our Schools Safe

Image may contain: 2 people, night and crowd
[Image description: a candlelight vigil; a large crowd of people outdoors at night holding lit candles]

**Content warning for in-school abuse, confinement, restraint, and murder of an autistic person**

On November 30th, 2018, 13-year-old Max Benson was restrained by multiple school staff during an autistic meltdown. Staff members, including the principal, executive director, and special education teachers, took turns placing pressure on his back and held him face-down. After being held like this for over an hour and a half, Max vomited and lost consciousness. After twenty-five minutes from the time he lost consciousness, staff called 911 for a medical emergency. Max was taken away to a hospital, where he died two days later of multiple organ failure and cardiac arrest.

After Max’s death, multiple other students and former students of Max’s school in California, Guiding Hands School, shared their stories about how staff had violently restrained and confined them. The survivors shared how they lived in fear of staff that restrained them, and could never feel safe in school.

Sufficient evidence against Guiding Hands School staff was found in the criminal trial, and manslaughter charges were laid against the staff. Guiding Hands School remains closed to this day. But we still do not have justice. Justice is us having Max back. Justice is neurodivergent children being able to go to school and learn, and make friends, and be respected by staff members, not be treated as prisoners.

The restraint and forced confinement of autistic and neurodivergent students remains legal and widely practiced in the United States, in Canada, and around the world. Guiding Hands School is closed, but the conditions that led to Max Benson’s death have gone unchallenged. Max was a victim of violent staff members, but he is also victim of a system that autistic youth are still growing up in, where they can face restraint and imprisonment for autistic meltdown. Any other autistic student could have taken Max’s place, and unless the system is challenged, another student will.

As classrooms are right now, overcrowded due to austerity policies, overstimulating, and lacking in support for neurodivergence, autistic meltdown is an expected outcome for autistic students made to learn in this hostile environment. Having a room with low, gentle stimulation, as a “break room” or “sensory room” where an autistic student can decompress when overstimulated, is a necessary support for schools to put in place as long as classrooms remain hostile to autistic sensory perceptions. We fight for these rooms to be put in place. But in some cases, autistic students are confined in these rooms against their will, as disciplinary action for their meltdowns.

School systems that create conditions where autistic students cannot learn, discipline underachieving autistic students, confine them against their will when they are having a meltdown, and place them in restraints, are setting up autistic people for a life in the correctional systems. This is called the “School-to-Prison Pipeline”. Normalizing confinement, normalizing restraint, and disciplining people for their own natural bodily reactions to a hostile environment, induces trauma that will often result in the victim believing that they belong in confinement and restraint, and that they are bad people. Childhood trauma is a leading cause of criminal activity and abusive behaviour in teen and adulthood. Instead of a place where we learn art and science, schools that confine and restrain autistic people are places where we learn that we are bad people who should be in prison for other peoples’ safety.

We must challenge this criminal justice model of seclusion and restraint, to end the School-to-Prison Pipeline, ensure the safety of autistic youth, and make our schools a place where autistic people can learn to be leaders in their community. Instead of being punished for divergent behaviour and meltdowns, we must observe what environment factors are causing a child with a divergent mind to melt down and feel unsafe. We must build school systems flexible to the needs of the students and each person’s safety, rather than make them conform to a hostile, dangerous environment.

A typical child goes to school, gets an education, and becomes a community leader more often than a neurodivergent child because the typical child does not find school to be a traumatizing experience. We must work to make these schools a place where neurodivergent children will not be traumatized, to bridge the gap between the likelihood that a child with a divergent mind will succeed in school compared to a typical child.

Autistics and our Fur Family

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[Image description: The author Christopher Whelan cuddles with his black and white tuxedo cat, both are looking at the camera]

Autistic people have difficulty picking up social cues, often communicate nonverbally, follow our own intuition, benefit from sensory stimulation, and require a safe home which will support our well-being.

Pets do not have social cues.  They communicate almost entirely nonverbally, and do not speak a language that people understand.  They follow their own leads, and their own intuition.  Pets are warm, soft, and cuddly.  And they protect us and keep us safe.

Pets and autistic people are a perfect match for each other, and maybe even a better match for each other than neurotypical people and pets.  Pets build routine into our lives; the need to give them food, water, exercise, clean and appropriate toileting, play time, and cuddles mean that the routine of caring for a pet builds structure into our lives.  These routines are critical to our functioning and our ability to get-up-and-go.  Some days it is hard for me to find the mental energy to get out of bed, but my cat Kaguya is hungry and she is meowing at me to get her something to eat.  Once I am out of bed, and I have fed Kaguya, it is easier for me to follow the rest of my morning routine, because I have gotten it started.  I am no longer laying in bed worried about all the things I have to do today, I am already working on completing the list of tasks I need to do.

Pets have no bias or prejudice, and do not discriminate based on ability or disability.  Our fur family gives us love without conditions, loving us for exactly who we are without a need to change ourselves.  Kaguya would love me whether I was autistic or neurotypical; she loves me for who I am.  Kaguya does not shame me for my interests, pathologize my behaviour, or call me hurtful names.  Because she accepts me for who I am, it is easier to accept myself for who I am.

I have read stories about dogs that bark when an autistic child is overstimulated and in meltdown, and the familiar stimulus of their beloved dog barking helps the autistic person to regulate their feelings.  My own cat, when I am overstimulated, climbs onto me and sits down, applying her body weight onto me and purring.  The weight, the warmth, and the purring vibrations help me to regulate my feelings.

The inclusion of animal family and friends into the lives of autistic people brings so much joy into our lives.  A friend we can rely on to love us unconditionally is key to good mental health and wellness.  Our fur family helps us maintain our health, accept ourselves, and grow as people.