Value the Input of Autistics on Autism Policy

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“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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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.

Hold Space for Multiply Marginalized Autistics

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A multiply marginalized person is someone who identifies as being from more than one marginalized group. An example of an intersected person is an LGBTQ+ Indigenous person, a disabled woman, an elderly Muslim, or a neurodivergent first-generation immigrant.

Being multiply marginalized creates a whole new set of challenges to face; an LGBTQ+ Indigenous person must not only deal with homophobia/transphobia and racism, but unique marginalization not experienced by people who only have to deal with homophobia/transphobia or only have to deal with racism. Only those people who live that experience are able to observe, note, and understand the unique barriers of prejudice and discrimination that they face, and therefore nobody but they must present and represent on these issues.

A multiply marginalized autistic is an autistic person who comes from one or more other marginalized groups; autistic women, BIPOC (Black/Indigenous/Person of Colour) autistics, transgender and non-binary autistics, physically disabled and chronically ill autistics, Jewish autistics, and migrant autistics are included in the population of multiply marginalized autistics.

The story of autism, thus far, has predominantly been the story of white, cisgender, young heteronormative men such as myself. We have dominated the conversation for so long that mainstream understanding of the autistic experience has been shaped around what the experiences of my own population are, but we are missing so much of the story because we have excluded multiply marginalized perspectives of autism.

Coming from this most dominant group, my story has mostly been told already. I was a “gifted child” who was a brilliant learner but “lazy” (tested in neurotypical manners and placed in learning environments where neurodivergent people cannot thrive). I read many books but underachieved in school. I missed social development milestones and had a hard time making friends. I played with Lego and Nintendo games.

I did not have to face police violence, disproportionate poverty, and the school-to-prison pipeline that many BIPOC autistics have had to survive in. I am not a member of the Lost Generation of autistic women who had their autistic behaviours coded as a personality disorder, blamed on menstrual stress, and were conditioned to hide their own personal pain and trauma to impress men in our patriarchal society. I am not LGBTQ+, and have not had to face ableism and exclusion within communities that wear the label of Pride but enforce its own code of behaviour and are intolerant of people who are not abled. I have never had to live in an institution, I have never been in prison, I have parents who love and support me and have always had a good home life when many autistics cannot say the same. Therefore, my knowledge of these experiences is limited by the fact that I have not lived them.

That is why we must take an active role in including autistics from other marginalized groups into our conversations about autism. We must not just invite them into our conversations, but challenge ourselves as to who is missing and why intersected people are not already in our circles. We must do humbling self-observance on how our own behaviours, attitudes, biases, and prejudices have lead to autistics with other experiences of oppression forming their own separate communities instead of feeling welcome within ours. Only when we allow autistics from multiply marginalized groups to play a leading role in conversations about autism, and we work to change the dominant story of autism, can we have an accurate perspective on the spectrum of autistic experiences.

In closing I would like to link Autistic, Typing’s wonderful Pass The Mic post. Pass The Mic is an initiative to raise awareness of BIPOC and ethnic minority autistic self-advocates. You can find this directory of BIPOC and ethnic minority self-advocates to follow at https://www.facebook.com/AutisticTyping/photos/a.389117508355320/455211958412541/?type=3&theater

Presume Competence

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Autistic people are capable of an entire spectrum of talents, skills, and abilities, and autistic people are found performing all of the roles in society that typical people perform. At the same time, there are many things that autistics are not able to do. Our profiles of abilities and disabilities varies from person to person. It is extremely disrespectful to assume that somebody is not able to do something because they are autistic. Such an attitude presents a low regard for autistic and disabled people and is far from reality.

The historic and ongoing views that autistic people will never reach the ability potential of a typical person contributes to continued ableism against autistic people. Autistic children, who are assumed to never be able to achieve education and career goals comparable to their classmates and peers, are afforded lower-quality educations and receive less supervision and encouragement. When an autistic child performs in a way that is comparable to or exceeds the skills of their peers, they are deemed to be “not that autistic” or “not as disabled”. This ableist perspective fractures our community, as autistics who demonstrate competence are classified as typical in order to maintain the status quo view that autistics are not competent. “Autistic” therefore remains a label of shame and incompetence when it should not be.

When people do not believe in the capability of autistics, we also lack faith in our own capability. We may fall into a depression about not being able to achieve what our peers do, when it was not because we couldn’t but because other people did not believe that we could. We may underachieve in school, not bother applying for jobs, not try making friends, because we have internalized that we are not capable of doing those things.

It is more likely that we are able to do all of those things that contribute to a high quality of life if we receive accommodations and if society becomes more accessible to more people. Sometimes it is not that we are incapable of public speaking, but that we are incapable of public speaking because nobody bothered to teach us public speaking skills because they thought we would not be able to grasp them. Sometimes it is not that we are incapable of problem solving and mathematics, but that we are incapable of sitting at a desk and writing out our thought process on paper.

Autistic people must always be presumed to be competent and able to perform a task or skill that would be expected of anybody else their age, unless the person communicates that they are disabled in that way. Each autistic person spends their life exploring what they are able and not able to do, and we understand our ability profiles better than anybody. When we do state that we are disabled from doing something, we must be believed. We have tried over and over; we just can’t do some things and not being believed hurts our sense of self. But there are many things that we can do, and our growth and development should be encouraged on a level that all of our typical peers receive.

Free to Stim

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The quality of life for an autistic is directly tied to our ability to self-stimulate, or “stim”. Stimming is the personal pursuit of sensory stimulation. It can be flapping our hands, dancing, twisting our necks, clapping, knocking, rocking, singing, chewing, saying our favourite words, making noise, or anything else that stimulates the body. Stimming can be done alone or with a group. Sometimes we stim with objects, like blowing bubbles or watching a lava lamp. We stim for happiness, for fun, for creative expression, for communication, for learning, for anxiety, and to feel safe. Stimming needs no reason, and has no underlying behaviour except the pursuit of a better quality of life.

Sometimes we stim when we are happy. A “happy dance”, “happy hands”, “happy feet” etc. often accompanies when an autistic person feels seen, when we see or hear something that makes us happy, and when our friends and loved ones are nearby.

Sometimes we stim to learn about the world. When we are told something, the knowledge comes to us as a cold product; it has no context or environment. We cannot experiment with it, see what happens when different force is applied, see what happens when it is placed in a different environment, or understand the important details. When we have something in our hands, we can run our own experiments on it and learn what we want to know. This is a form of stimming.

Sometimes we stim when we feel that we are in danger. Autistic people perceive danger in different ways than typical people, because we perceive the world through different senses. We are sensitive to sensations that other people are not, and de-sensitized to some things that most people are sensitive to. And each autistic perceives these senses differently than another. A fireworks show which may make some autistics panic from the bright lights and loud bangs might stimulate and entice another autistic person. A whistle being blown by a prefect during recess may make us feel that we are in danger, or energize us. Each person has a different sensory profile. Many of these sensations are not within our control. We can’t turn the fluorescent lights off in the grocery stores or the mall. We can’t stop people from beeping their car horns. We can only change what we do to keep ourselves safe.

The first thing that we should do when an unsafe sensory stimulation occurs is to remove ourselves from the situation if at all possible; to stop eating the food with the Bad Texture, to run from the unsafe thing and return to a place where we feel safe. If we have to stay in the unsafe environment, then we can use personal aids such as sunglasses to reduce the light coming into our eyes, ear defenders to protect us from harsh sounds, and wear our favourite gloves, clothes, and jackets to protect us from unsafe physical touch sensations. Stimming is something else that we can do to return ourselves to a feeling of safety. If we can stim, we are safe.

Every autistic can recall a time where we stimmed and were shamed for it by schoolmates, teachers, friends or family. This bullying has impacted the self-esteem of autistics, and lead to us feeling ashamed for being autistic. Having our stims shamed leads to us choosing not to stim; we forgo this healthy, self-regulating behaviour that helps us survive in a world full of unsafe feelings.

We must be free to stim at all times and in all places. Stimming must not be a reward for good behaviour, it must not be against the rules, and it must not be punished or shamed. It must be allowed and provided to us anywhere we go.