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

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[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

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[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.

We Wear What We Want

Autistic Style – Doodle Beth's Blog of Stuff | Autistic, Aspergers ...
[Image description: A young woman with pink hair halfway down her back, wearing headphones, sunglasses, a blue t-shirt and green pants, and a fuzzy stim toy on a lanyard around her neck.  The text reads: “Autistic Style”, “Headphones: Even if you’re not listening to anything, headphones are great for blocking out the sounds around you.  Plus people are less likely to talk to you.”, “Sunglasses: Great for when you’re somewhere bright and overwhelming.  Also good if you worry about not making eye contact – if they can’t see your eyes, they can’t see you’re not making eye contact”, “Comfortable Clothes: Super soft, no nasty seams or irritating labels.”, “Stim Toys: Stimming is a great way to help you feel calm.  Keep something with you that can keep your hands busy.

Credit to Beth “Doodlebeth” Wilson for this picture]

Recalling that autistic people interpret sensory stimulations differently than most people, it cannot be understated how important our favourite clothing is to us.  Our favourite clothes are those clothes that our skin has grown accustomed to the feeling of.  They make our skin feel safe, comfortable, and protected.  The absence of our favourite clothes makes us feel, for lack of a better term, exposed.  Even if we are still wearing other clothes, we feel vulnerable and unsafe.

I need to wear the same leather jacket whether it is +20 degrees celsius outside or -20 degrees celsius outside.  I never wear snowpants even when there is a blizzard.  I cannot wear sweaters, scarves, or anything on my head.  I will only make the seasonal change from my flat Converse shoes to my winter hiking boots once I have slipped on the ice more than once.  I wear t-shirts and jeans that were bought 7 years ago, and which I have worn 1-2 days a week since they were bought.

Colour is equally as important to the decency of autistic clothing as the fabric.  We must wear the colours which we have identified as safe, and which align with our comfort needs.  Each autistic person has different needs around colour, graphics, and styles.  I need all of my clothing to be in dark tones, either black, grey, or blue.  I will only allow graphics on my clothing if I can’t feel the graphic through the shirt.

New clothing also makes us feel insecure and unsafe.  I always hated receiving gifts of new clothing, even if my family had good taste.  New clothing meant unfamiliar sensory sensations, and any clothing I would have to wear would need to be broken in over a period of months.  Until those months had passed, I would feel every seam and thread constricting my body and angrily rubbing against my skin, which had grown accustomed to the clothes I had worn before.  I couldn’t be productive, or comfortable, wearing anything that my skin had not grown used to yet.

I also hate trying on new clothes.  New clothes means all kinds of new, unfamiliar, unsafe feelings on my skin.  I want to be anywhere else besides a change room of a clothing store trying on new clothes.

I have notions in my head about what I should look like.  Some of those notions include clothing that I don’t already own or have worn yet.  I would only make the transition from old clothing to new clothing if I felt that the new clothes brought me closer to my vision for myself.  I have occasionally surprised my entire family by all of a sudden wanting to wear white v-neck shirts, or cargo pants with chained pockets, or combat boots, because at the time that’s the vision I had for myself.  I had to do much of my own clothes shopping for that reason; anybody trying to gift me clothes was just trying to guess what my vision was.  After many years my family learned my preferences but that was a very long process.

Support the autistic people in your life by allowing us to wear what we want.  Even if it seems unfashionable to you.  It’s not about fashion to us; it’s about safety, and it’s about authenticity.  Autistic people should be given the acceptance to be authentic, and that means wearing the clothes that our bodies want to feel.

Shut Down Unethical Autism Research

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[Image description: the objective lenses and aperture of a microscope]

The MSSNG, the “world’s largest open-source whole-genome database specific to autism”, was launched in a partnership between Autism Speaks, Google, and the University of Toronto’s SickKids Hospital in 2015.  The most recent iteration of MSSNG, with the DB6 dataset, launched in October 2019, is an open database of the DNA of 5102 autistic people, 6079 allistic (non-autistic) neurodivergent people, and 131 people without any autistic traits.  The stated purpose of the MSSNG database, according to its website, is to “make its data as useful and widely accessible to researchers as possible” and to “promote and enable ‘open science’ research to lead to a better understanding of autism”.

The focus of this database is to make autistic DNA to as many researchers as possible.  To access the database, you need only make an official request query.  There are no questions asked about what the database will be used for.  MSSNG could be thought of not as a pool of data with an intended purpose, but as a reference library where you need to make a request to the librarian and book a time to be allowed inside.

We raise ethical concerns about Google collecting our fingerprints for biometric recognition on our cell phones.  Google is collecting the blood of autistic people for its records, and then disseminating our data to just about any researcher who posts a query.

The worst part is that it is taking blood from people who are not consulted.  In many cases, it is the parents who are volunteering their child’s DNA biometrics on the child’s behalf.  The biometrics are stored on the database in perpetuity; even if the child becomes a self-advocating adult who does not want their personal DNA stored on a Google Cloud, there is no way to rescind the contract.  If you grow up to be an autistic person who does not want to be a science experiment, a science experiment you will remain, because your family signed your data away.

An open database of the genetic material of neurotypical people is nothing short of a cyberpunk, Orwellian nightmare.  It would never be tolerated in a free, democratic society.  Because we all know what such a database is the precursor to: designer babies.

Designer babies are when genetic codes are artificially engineered to promote preferred genetic traits, and genetic traits that are unwanted are discarded.  It is the ultimate weapon for a eugenic future.  Cultures that do not tolerate homosexuality or gender fluidity may use designer baby technology to promote genetics that align with binary gender and heteronormativity, and discard genetics tied to sexual orientations and gender expressions that they deem to be culturally deviant or sinful.  Nations may use designer baby technology to end disabilities tied to genetics in order to alleviate public resources used by the health care system and social services, lower taxes, and make its population more productive.  This would be the end of neurodivergence, as the brain would be artificially crafted to be the most productive and the least deviant from what is considered normal.  Autism would be cured, at the price of humanity’s freedom to be different from the crowd.

What possible use would an open database of genetic samples be used for, other than eugenic research?  What would be the destiny of such a database, free and open for researchers of any ideology to use?

Autism acceptance means that our DNA must be given the same ethical considerations that neurotypical DNA is given.  Autistic medical research samples must be given the same confidentiality and discretion that a neurotypical expects of their X-rays, their CT scans, and blood samples.  We need to know that our DNA will only ever be used to promote our own individual health, and not up for grabs to any curious inquirer. 

Our DNA must never be volunteered by anybody but ourselves.  Any time our DNA could help the field of medicine, a contract must be given to us, written in plain language, and signed by our own hand.

I would like to close with criticism that “autism research” has always been in the locus of medical and genetic research.  Autism research has rarely if ever meant sociological research into how autistic people fit ourselves into our communities, anthropological research into how we meet our basic needs, or social work research into how most effectively to support autistic people in our goals towards self-actualization.  Autism research has normally taken place in test tubes and flasks, and rarely in qualitative interviews with autistic people.  Test tube research promotes nothing but a world without autistic people, and once that’s done, a world without unique people.  Sociological research, and anthropological research, promotes the well-being of autistic people and guides scientific fields into how to help us achieve social equality with neurotypical people.