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.

Safefood: The Medicinal Properties of Chicken Nuggets

Every culture in the world recognizes the healing power of food. The confidence and optimism for the day you feel when you eat a breakfast full of nutrients. The emotional healing that a bowl of ice cream after a bad day brings you. Families growing their connections to each other by eating dinner at the table together. The comfort of your favourite meal, cooked by your mom. There is nothing in the world so disastrous to a person that good food cannot help you heal from, if only just give you a temporary break from all your other stimulus.

[Image description: a plate of chicken nuggets, fries, and two dipping sauces, one golden brown and one white]

Autistics have a very special connection with food. We develop personal relationships with it. Our favourite foods are not just comforting to us; they are as important to us as every other comfort item we fall back into when our world becomes too overstimulating. Our favourite foods are our stability and our safety.

Autistic culture has coined two terms to describe our relationships with our favourite food: safefood and samefood. Safefood is a food that brings us joy, comfort, and peace when we eat it. Samefood is a food that we have grown so attached to that we can, or do, eat it every day. It is very normal for safefood to also be samefood.

Because different autistic people have different sensory profiles for what we can tolerate and what excites us, safefood is not universal. An autistic person who has a low tolerance for stimulation might prefer food with soft textures, like Kraft Dinner, mini pizzas, and chicken nuggets. An autistic person who needs lots of stimulation to feel anything may enjoy a bowl of mapo tofu, hot wings, or kimchi more than most people and have that as their safefood/samefood. But once we have developed that personal connection with a dish, that bond is hard to break and really should not be tampered with as it is a mental health support.

The dish, once we find one that comforts us, should always be prepared in the same way. It should be the same brand, the same ingredients, and the same chef. If this routine can be maintained, the highest comfort for an autistic person follows. Nothing is worse than our safefood/samefood having its recipe changed, or it being taken off of grocery store shelves.

Right now during the COVID-19 state of emergency, I have relied on my safefoods, like teriyaki rice bowls, cheddar broccoli pasta, and mini pizzas for emotional support as the lockdown has interrupted nearly every other one of my comforting routines. Having this food is directly tied to my mental health. If something ever interrupted my ability to make cheddar broccoli pasta, that is my brain’s signal that the world is ending and I am in danger. But if I can make a cheesy, fresh bowl of creamy pasta any time I want, my brain knows that everything in my world is going to be okay. I am safe.

Make Education Accessible for Autistics

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[Image description: students sit shoulder-to-shoulder in a lecture hall, all wearing school uniforms with white tops and blue bottoms]

Autistic students are able to excel in education when we can take control of the ways that we learn, and develop our own systems for learning. But public schools were not built for students to control their environment, learning material, instruction style, curriculum, what instruction time will be used for, and the amount of time that can be devoted to a subject. To support autistic learners, education must be flexible, tested in flexible ways, guided by student self-advocacy, delivered in accessible ways, and supported by staff.

Autistic education is hindered by crowded classrooms, disruptions, noise, and the social nature of group learning. These are all unfortunate realities of public school in its current form. Autistic students can be pulled from crowded classrooms and placed in segregated special education to accomodate the needs of autistic students by limiting stimulation, but special education also has drawbacks. When students are segregated from their peers, they are no longer seen as part of the class. They become the “other”, ostracized by their peers. It also “outs” the person’s autism, and opens them up to bullying targeting disabled people. They can receive messages from other students that they are of less value than abled, neurotypical students.

Special education also tends to carry values of Behavioural Analysis, and exercises targeting a student’s behaviour are a common part of special education. While a student in special education is being bullied by their peers for needing different programming to meet learning needs, they are also being stigmatized by staff working to change the person’s individual behaviours to appear more typical. Imagine how distressing this is for an autistic person; for their fellow students to tell them how annoying their autistic behaviours are, and then have staff members side with the bullies and work to change the autistic behaviours instead of disciplining the bullies. This sets a precedent for a world where people with typical neurotypes will continue to disparage people with divergent minds without social consequence, and the autistic person for a life of believing they need to act typical in order to be accepted.

There is little thought given to making a typical classroom more accessible for autistic learners, instead of forcing an autistic learner to conform to the needs of the school. As school systems face continuous austerity measures, classroom sizes get larger and more compact, with fewer teachers and assistants to help guide students. Each student has their individual needs folded into the needs of the school, rather than as it should be, the other way around. The people least affected by these austerity measures will be the learners with the most typical neurotypes, able to follow instruction and pass testing most closely to the way that the school system prescribes. Those people who cannot learn in these rigid ways, people with divergent minds, will be left behind. They will underachieve. They will drop out. Not for their own fault or lack of trying, but for the failure of the learning systems that students are compelled to conform to.

Inequality of education is inequality of opportunity. A student who is placed as a lower priority by school systems is set up for a life of believing themselves to be a lower priority person.

In order for education and opportunity to be equitable for autistic people as it is for people with typical neurotypes, we require that school systems work to make classrooms more accessible by limiting stimulation, giving autistic students more time to complete work, allowing autistic learners to freely stim in class to self-regulate, and deliver learning in multiple methods. If a student excels in special education more than they do in an accessible classroom, then the student must have their learning day integrated between classroom education and special education, so that the student can excel in academics while still socially integrating themselves with their peer groups. We require more funding for teachers and teacher assistants, both for raises (because they deserve them) and for hiring extra staff to ensure that neurodivergent people receive the one-on-one guidance we need to excel in school and take advantage of all of life’s opportunities.

Promote Neurodivergent Peer Support & Advocacy Groups

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[Image description: approximately 20 adults sitting in chairs in a circle formation, in a room.]

A neurodivergent sharing circle is a place where neurodivergent people can learn to slowly unmask and grow into our natural selves. It is a place of acceptance, kindness, and celebration of who we are. It is a place where we do not need to keep track of unwritten social rules, follow cues, or pretend to be somebody who we are not.

When a group facilitator works to ensure that everybody has a chance to speak, uninterrupted, it can be a place where everybody has a chance to tell their own story, from their own perspective. When we are allowed to share this way without interjection from others, and be heard by people with similar experiences, it develops a bond of community between the sharer and the listeners that is not found outside of the circle. When we are accepted by others, we learn to accept ourselves. When we are loved by others, we learn to love ourselves.

Neurodivergent sharing circles are critical supports for mental health and community integration. Normally, outside of our homes, we have to behave a certain way and follow unknowable social rules in order to be accepted. Acceptance and love in typical community spaces like workplaces and businesses is conditional on following these behaviours we did not come up with or agree upon. We have to wear a mask and pretend to be a different person in order to receive this conditional acceptance. Wear the mask for too long, and you begin to feel that all love is conditional, and all acceptance is conditional. We begin to feel that our real selves are unacceptable and unlovable. When you believe that you are broken and unlovable, that is the cause of addiction, self-harm, and suicide. But when you are in a space where love and acceptance are given to you without condition, then good mental health follows.

These circles are also important for the perpetuation of disability culture, and the sharing of our history and values. In society, disability is seen as something that is experienced alone, and that being disabled makes you the “other”, and an unacceptable burden to the abled people around you. But disability is a communal experience, not an individual experience. Even if we exist on a spectrum, we have similar social experiences of being excluded or made to feel unworthy because we were disabled. Or that we had to hide who we were in order to be accepted. Linking our experiences together in the sharing circle transitions the individual story to the story of us all.

When you share your story, and the challenges that you face, people who have experienced or are experiencing what you are going through can offer guidance on what can be done to build strength and support. Disability elders, who have lived with disability for a long time, can guide disabled youth on what they did when faced with adversity. People in the sharing circle often develop friendships, and check in on each other to ensure that everyone is well and adequately supported.

When a communal story of disability identifies a common barrier that members face, then the whole circle can advocate together for an official response to the barrier faced. The circle can bring testimony based on multiple lived experiences to politicians and community leaders, as the voice of many speaking together is stronger than one voice alone. Instead of relying on advocates who do not have lived experience to bring disability issues forward, a whole community of people with lived experience can offer accurate, cohesive solutions that benefit disabled people to those leaders who can make the change.

We ask that communities and disability services create space for neurodivergent sharing circles to take place. We ask that neurodivergent sharing circles become recognized as essential mental health supports. And we ask that these sharing circles remain by-us and for-us, lead by neurodivergent people, with all people holding equal status and equal authority in the circle.

Let Us Lead

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[Image description: a black-and-white photo of three men in business suits, sitting at a table.]

Autistic people are absent from the boards and guiding committees of many autism services and nonprofits, and their absence is felt in the work of these organizations. When autism services are guided by committees without any member having the lived experience of being an autistic person, that lack of expertise results in unsatisfactory organizational results. Services developed by autistics for autistics are sensitive to the holistic needs of our population, and produce better results. Autistic leadership can also help organizations steer clear of actions that would provoke a negative response from the community that they serve.

Consultation with autistic people alone is not enough to ensure that “nothing about us without us” is fully realized. Consultation comes after the initial idea and conversation about a new initiative that takes place in the board room. Lived experience self-advocates must be present for that initial idea and initial conversation in the board room, so that the idea has a competent direction from the beginning. Lived experience self-advocates must also be able to put forward our own ideas from the place of being a director, and influence the core principles and mission of an organization, in order to provide the best practices for the well-being of our community.

Autistic people need to see people with their lived experiences in positions of leadership in order to see themselves as capable of becoming a leader themselves. When neurotypical and allistic people hold all of the power over us, the autistic consumers of services, then that becomes our cultural image; that an autistic will never achieve what a neurotypical or allistic person can achieve. It becomes engrained in our minds that neurotypical and allistic people are destined to hold the power and the voice, and autistic people are meant to be the passive receiver of services and should not be seen or heard. Placing autistic people into positions of leadership, guiding our services, means that person can serve as a role model and show that autistic people are capable of being leaders in their community and around the world.

A minimum 50% representation of lived experience self-advocates should be the goal of any board of directors or guiding committee for an autism organization. To achieve “nothing about us without us”, the autistic self-advocate directors should be able to vote as a bloc to overturn initiatives seen to be progressing an ableist agenda or an initiative that would not be well-received by the autistic community. Placing this much power in our hands is a demonstration that these organizations believe in the power and competence of autistic people, and that we should be both seen and heard.

Value the Input of Autistics on Autism Policy

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[Image description: twelve people in casual clothing sitting around a board room table]

“Nothing about us without us” is a creed in the disability world meaning that all policies affecting disabled populations must be subject to substantial consultation with the affected population before they can be enacted. Autism services, nonprofit organizations, and policy makers have a duty to consult with autistic people before launching initiatives, and when reviewing and auditing the impact of autism services. “Substantial consultation” means that the pool of disabled people consulted must be high in volume and diverse in background. We feel the need to differentiate “substantial” consultation from “token” consultation as we continue to face tokenization in the consultation process.

Token consultation occurs when the number of abled people consulted on a policy affecting disabled people outweighs the number of disabled people consulted on the policy, and/or the input of abled people reaches the final product to a higher degree than the input of disabled people. An autistic self-advocate is tokenized when they are “consulted” on policies affecting them, but their input is not valued and their advocacy is not apparent in the outcome of the policy. Token consultation is not appropriate or acceptable in spaces that work to be inclusive of disability.

Token consultation is an important issue in autistic self-advocacy because there are funding dollars for nonprofit organizations attached to consultation. There are organizations that want that extra funding, but do not want the trajectory of their initiatives to be impacted by autistic self-advocates. During the consultation, many self-advocates are silenced during the process, we face bullying from abled people on the consultation panel, and in many cases our contributions are not valued and barely reach the final report if at all. But because the final report can honestly state that lived experience advocates were consulted, the organization receives the dollars that they are applying for.

To combat tokenization, we require a commitment from all people who donate to autism organizations, and all people on funder panels who distribute funding for autism organizations, to be critical of what degree an autism organization consults with autistic people. When an organization releases a consultation report prior to the enactment of a policy or initiative, ask questions about what autistic self-advocates had to say during the process. Ask for the names of self-advocates who were consulted, and reach out to us. And if an organization cannot produce a consultation report before launching an initiative or policy, take your funding to an organization that can.

Validate Self-Diagnosis

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[Image description: A binder of documents, stacked with papers, paperclips, and an office stamp]

Until recently, autism self-advocacy has been mainly limited to autistics and neurodivergent people who had received a diagnosis of autism or one of its historic predecessors from previous editions of the Diagnostic & Statistical Manual of Mental Disorders (DSM), such as Asperger’s Syndrome, Rett Syndrome, PDD, or PDD-NOS. The autistic community is now recognizing the value of allowing people who identify as autistic, but who have not received a formal diagnosis, in participating in self-advocacy with equal authority as somebody who had been formally diagnosed as autistic. We recognize that there are too many financial and demographic barriers to autistic people receiving a diagnosis to justify excluding people who had not been diagnosed.

If diagnosis was a prerequisite to be a part of the autistic community, the entry fee would be the cost of a Disney vacation. Diagnostic testing for neurodivergence costs thousands of dollars to pursue, and at the end of the testing you might not even get the right label. This means that many working class and impoverished autistics who could not possibly afford the luxury of testing would be excluded from our community. This would drop our numbers to nil; 86% of autistics are unemployed and most of us live on income support that does not even cover our basic needs. Too few of us have the financial capacity and privilege to receive diagnosis.

We also recognize that whether or not a person receives a diagnosis has very much to do with their demographics such as gender and ethnicity, and that in many cases it is a matter of privilege to receive a diagnosis. Teachers, caregivers, and doctors may see somebody struggling to keep up in class, and struggling to make friends, and blame it on “laziness”, “lack of focus”, or “distraction”, particularly more often if the person is from a minority ethnic group. Authorities from dominant demographic groups, holding prejudices against minority groups, may see the struggles of an autistic person from a minority ethnic background and believe that their behaviour is typical of someone from that ethnic group. When autistic behaviour is blamed on these factors, neurodivergence is left out of the question, and testing for neurodivergence is not pursued.

We must also observe the Lost Generation of autistic women, whose autism was diagnosed as mental illness or a personality disorder, if it was diagnosed at all. In many cases, autistic women are diagnosed as not autistic, because the behaviours that a doctor is testing for are the autistic behaviours as they present in men. An autistic woman may list all of their divergent traits, only to be given another diagnosis or released without any diagnosis, because the doctor is just not familiar with how autism presents in women.

There are also ethical concerns about gatekeeping the autistic community based on diagnosis. Is the label of “autistic” really something that should be passed on to us from an authority figure? A scratch on paper that entitles us to special education planning and limited home supports? Or is it something that is undeniably a part of us, and existed long before autism was “discovered” by the medical community? Is it a label or a lens through which we see the world? In general terms, even doctors who specialize in autism just do not know enough about our experiences to be a guiding authority on who is an autistic and who is not. The Spectrum is universal, and expanding. Nobody understands The Spectrum, you just know how it feels to be on it.

When you are autistic, you know when you are among your own tribe and your own people. You feel welcomed, accepted, and able to be authentic in a way that you cannot be with other people. This community spirit is the freedom to finally live without having to pretend to be somebody else. It is a heartfelt, spiritual feeling of coming home. And you feel it no matter what a piece of paper from your doctor says.

Too many evils are committed when we hold the gate closed from people who are not diagnosed; diagnosed autistics are predominantly white males from western democratic nations, and we will continue to upstage the rest of the world’s autistic stories if autism self-advocacy remains gated on these terms. We will exclude many people who cannot afford testing and who fall out of the criteria for funding for testing. To develop and expand a global autistic community, we must recognize that autism is bigger than any one person, and that it is not up to one person to say who is autistic and who is not.